18274 Paed. March 04 cover1 - The Chartered Society of

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Articles in this issue ...
Volume 5 Number 1
May 2014
From Stable Standing to Rock and Roll Walking: the
Importance of Alignment, Proportion and Profiles
The Learning Experiences of Parents with Children
Requiring Physiotherapy Intervention
Children with Cerebral Palsy: Perspectives of Using
Standing Frames
ASSOCIATION OF PAEDIATRIC
CHARTERED PHYSIOTHERAPISTS
Ponseti Method of Clubfoot Treatment: Putting the
Evidence into Practice
JOURNAL
A Literature Review of the Ponseti Method of
Clubfoot Treatment
Dedicated Physiotherapy Clinic for Children with
Down Syndrome
Case Study: The Impact of an Integrated Education /
Therapy Approach on GMFM-66 Scores in a Child with
Cerebral Palsy
A Method to Ease Comparison of Clinical Outcomes in
Children with Cerebral Palsy
apcp.csp.org.uk
May 2014
Professional Network of the Chartered Society of Physiotherapy
Editor
Cate Naylor
Editorial Board:
Jo Brook
Sue Bush
Sue Coombe
Jeanne Hartley
Lesley Katchburian
Marion Main
Fiona Price
Luke Watson
Aims and scope: the APCP Journal aims to publish original research and other scholarly work related
to paediatric physiotherapy – its scientific basis and clinical application, education of practitioners,
management of services and policy.
Please send your articles for the next edition of the journal to va@apcp.org.uk by 1st July 2014.
Please include your home email address as we are finding that our replies to your NHS addresses are
frequently not delivered.
APCP
PO Box 610
Huntingdon
PE29 9FJ
email: va@apcp.org.uk
website: apcp.csp.org.uk
May 2014
APCP JOURNAL
JOURNAL OF THE ASSOCIATION OF PAEDIATRIC CHARTERED PHYSIOTHERAPISTS
Volume 5 Number 1
May 2014
CONTENTS
Editorial
Cate Naylor – APCP Editor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Eva Bower - A Career in Paediatric Physiotherapy
Mark Bower. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Letter to the Editor
P. Smith, A . Brady . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Scholarly Article
From Stable Standing to Rock and Roll Walking: The Importance of Alignment, Proportion and Profiles
E. Owen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Original Research
The Learning Experiences of Parents with Children Requiring Physiotherapy Intervention
D. Wilson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Children with Cerebral Palsy: Perspectives of Using Standing Frames
S. Hughes , L. Campbell . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Literature Review
A Literature Review of the Ponset Method of Clubfoot Treatment
S. Double . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Service Development Reports
Ponseti Method of Clubfoot Treatment: Putting the Evidence into Practice
D. Watson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
Dedicated Physiotherapy Clinic for Children with Down Syndrome
J. Rawlings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56
Case Study
The Impact of an Integrated Education / Therapy Approach on GMFM-66 Scores in a Child with CP (GMFCS level IV)
S.Kay. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64
Research Report
A Method to Ease Comparison of Clinical Outcomes in Children with Cerebral Palsy
P. Butler, R. Major, P. Holbrook, S. Bew, L. Ford . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
Book Reviews
Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions
C. Calderon . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
Measuring Walking: A Handbook of Clinical Gait Analysis
J. McCahill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Rare Diseases
CLOVES Syndrome
A. Jones . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75
Cochrane Reviews
Interventions for Promoting Physical Activity in People with Cystic Fibrosis
S. Coombe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
Chest Physiotherapy for Children with Pneumonia
S. Coombe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78
Submissions to the APCP Journal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
1
EDITORIAL
Eva Bower – A career in paediatric physiotherapy (by her son, Mark Bower)
Cate Naylor– APCP Journal Editor
During the early years of her career in paediatric physiotherapy, Eva mainly worked in special schools
including during the 1960s at the Franklin Delano Roosevelt School (FDR) in Swiss Cottage. An early
example of her openness to novel approaches followed attendance at a Margaret Rood sensorimotor
stimulation course. Eva arrived back at FDR with a battery driven rotating paint brush which she then used
on a number of the children, to much amusement but little physical effect. However, her drive to find new
and improved strategies for children with cerebral palsy was not diminished. Some time after this, she and
her physiotherapy colleague Do Michael were sacked by Miss Duffield, the head of Middlesex PT schools.
Their crime was to start up and run a conductive rehabilitation Peto group at FDR after a visit to the Watford
Spastics Centre run by Dorothy Seglow and Esther Cotton.
In November 2013 Eva Bower retired as Editor of the APCP Journal and I would like to take the opportunity
in this, my first editorial, to pay tribute to her and to wish her a very happy retirement. Eva has had a long
and distinguished career in paediatric physiotherapy and has made an outstanding contribution to our
profession as a clinician, researcher and teacher. More recently, the APCP invited her take on the role of
editor of our Journal, and under her experienced eye, it has gone from strength to strength.
I first met Eva when I was a young paediatric physiotherapist working in London whilst she was based at
the Newcomen Centre at Guy’s Hospital. Eva inspired me then with her knowledge and enthusiasm for
improving the quality of paediatric physiotherapy and her devotion to her patients. After many years as a
clinician, Eva moved into the world of research and became one of the first paediatric physiotherapists to
gain a PhD. Her research looking at intensity of physiotherapy for children with cerebral palsy has been
very influential and continues to have an impact on clinical practice.
Eva has never been one to just take things at face value, and it is thanks to her enquiring mind and thirst for
knowledge that she has made such a contribution to our profession. This was recognised in 2000 when she
was made a Fellow of the Chartered Society of Physiotherapy. Eva has guided and supported many
paediatric physiotherapists over the years both in their clinical work and also into the world of research,
encouraging a searching mind and the desire to do the best for our patients. It is through Eva that I did my
Masters at Southampton and because of her that I continued my interest in research and gained my PhD
with her as my mentor. She is also the reason why I am now taking on the editorship of the APCP journal
and I hope to continue to maintain the high standards that she has set.
Whilst preparing this editorial I approached Eva’s son Professor Mark Bower to help me with some history.
He kindly provided me with a summary of Eva’s career which I found extremely interesting; not only
showing what an incredible and dynamic career she has had, but also for its insight in how paediatric
physiotherapy has changed over the past 40-50 years. We have decided, with his permission, to share this
with you in its entirety.
In this journal we publish a literature review of the Ponseti treatment for children with club feet followed by
a paper ‘putting the evidence into practice’. Ponseti is now recognised as the gold standard for treating club
feet and is generating a lot of interest amongst paediatric physiotherapists with more areas now offering
physiotherapy-led services. We also have an in depth look at orthotics and the current literature available in
relation to orthotics and biomechanics. There are papers from three of the physiotherapists who presented
at conference last year presenting more fully their work. Finally we have a report of a service that has been
set up for children with Down Syndrome looking at how outcomes for children have improved with this
approach to management and a single case study looking at integrated therapy.
I hope that with the assistance of the editorial board we will continue to produce a high quality journal and I
encourage you to keep sending articles in for publication. Please submit your papers for the November
edition of the Journal by email to va@apcp.org.uk by July 1st 2014
In the 1970s, Eva worked at The Vale School in Haringey for pupils with physical disabilities and associated
special educational needs, but her schemes appeared just as harebrained. To some people, adventure
activities are desert triathlons or hang gliding over volcanoes, but a weekend camping on the Isle of Wight
with a dozen severely handicapped children and no running water is a real extreme sport. School sports
days were just as challenging as the teachers and therapists were made to perform races that were designed
to make them appear less physically able than their pupils. Dedication to her children was unwavering.
One Christmas day a GP in Haringey phoned Eva concerned that the mother of one of her children had
walked out leaving the father to look after the disabled child. I remember that I spent most of that Christmas
day being dragged around the back streets of Haringey looking for the home of this unfortunate single
parent and finally eating Christmas lunch close to midnight.
By the 1980s Eva had moved to the Newcomen Centre at Guy’s Hospital where her academic career really
started as part of the complex neurodevelopmental disability multidisciplinary team specialising in
assessing, diagnosing and managing children with neurodevelopmental disorders. At a time when the
doctor always knew best, the high value that the consultant neurologists placed on Eva’s opinion was
remarkable. Senior paediatric neurologists, including Professor Brian Neville, were now listening to the
refugee whose father had refused to allow her to go to medical school despite her having secured a place. At
the same time she was visiting children in some of the most dangerous heart-sink estates in South London.
She was often met by parents who were incredulous at her bravery who rarely allowed her to walk back to
her mini unaccompanied.
In the 1990s her career took another diversion deeper into academia with an appointment at Southampton
University department of rehabilitation. Perhaps it was time to reflect on her practice and with the vision
that few possess, she chose to evaluate intensive physiotherapy and collaborative goal-setting on motor
function in children with cerebral palsy. She was supported and encouraged by Professor Lindsay McLellan,
whose work focused on adult rehabilitation following brain injuries. She completed her PhD in 1993 and it
amused her that this was the same year that I was awarded mine, and continued in post-doctoral studies as a
senior lecturer. All too few people continue to examine their own clinical practice and to question the benefit
of what they do. At the end of a lengthy career in paediatric physiotherapy that is exactly what Eva did;
establishing rigorous trials to evaluate the very interventions that she had spent the previous 30 years
performing. The usual unchallenging approach is to coast through the final years of your working life,
gradually winding down your practice. Eva’s final working decade was spent designing large multi-centre
intervention studies, applying for the research grants to support them, cajoling other physiotherapists into
participating in them and presenting and publishing the findings. She continued to encourage other
therapists to also pursue academic qualifications and careers by supervising MSc and PhD students and
lecturing globally. Whilst my father sought a peaceful retirement, he was dragged around the conference
halls of Europe and when lured into a month long holiday in Sri Lanka, found himself building equipment
for local disabled children.
After retiring from Southampton, she not only edited the 4th edition of Finnie’s Handling the Young Child
with Cerebral Palsy at Home, but made me write the chapter on complementary and alternative therapy in
CP when no one else was willing to! Typically she then gave all the proceeds from the book to Nancie Finnie
Charitable Trust. Finally the reader will know that she has been editor of the APCP journal for the last 3
years, holding editorial meetings in her Hampstead dining room, continually driving up the intellectual
quality of the manuscripts.
It has been a remarkable journey for an asylum seeker who went to primary school in London on her first
day during the Blitz, speaking only German.
2
3
EDITORIAL
Eva Bower – A career in paediatric physiotherapy (by her son, Mark Bower)
Cate Naylor– APCP Journal Editor
During the early years of her career in paediatric physiotherapy, Eva mainly worked in special schools
including during the 1960s at the Franklin Delano Roosevelt School (FDR) in Swiss Cottage. An early
example of her openness to novel approaches followed attendance at a Margaret Rood sensorimotor
stimulation course. Eva arrived back at FDR with a battery driven rotating paint brush which she then used
on a number of the children, to much amusement but little physical effect. However, her drive to find new
and improved strategies for children with cerebral palsy was not diminished. Some time after this, she and
her physiotherapy colleague Do Michael were sacked by Miss Duffield, the head of Middlesex PT schools.
Their crime was to start up and run a conductive rehabilitation Peto group at FDR after a visit to the Watford
Spastics Centre run by Dorothy Seglow and Esther Cotton.
In November 2013 Eva Bower retired as Editor of the APCP Journal and I would like to take the opportunity
in this, my first editorial, to pay tribute to her and to wish her a very happy retirement. Eva has had a long
and distinguished career in paediatric physiotherapy and has made an outstanding contribution to our
profession as a clinician, researcher and teacher. More recently, the APCP invited her take on the role of
editor of our Journal, and under her experienced eye, it has gone from strength to strength.
I first met Eva when I was a young paediatric physiotherapist working in London whilst she was based at
the Newcomen Centre at Guy’s Hospital. Eva inspired me then with her knowledge and enthusiasm for
improving the quality of paediatric physiotherapy and her devotion to her patients. After many years as a
clinician, Eva moved into the world of research and became one of the first paediatric physiotherapists to
gain a PhD. Her research looking at intensity of physiotherapy for children with cerebral palsy has been
very influential and continues to have an impact on clinical practice.
Eva has never been one to just take things at face value, and it is thanks to her enquiring mind and thirst for
knowledge that she has made such a contribution to our profession. This was recognised in 2000 when she
was made a Fellow of the Chartered Society of Physiotherapy. Eva has guided and supported many
paediatric physiotherapists over the years both in their clinical work and also into the world of research,
encouraging a searching mind and the desire to do the best for our patients. It is through Eva that I did my
Masters at Southampton and because of her that I continued my interest in research and gained my PhD
with her as my mentor. She is also the reason why I am now taking on the editorship of the APCP journal
and I hope to continue to maintain the high standards that she has set.
Whilst preparing this editorial I approached Eva’s son Professor Mark Bower to help me with some history.
He kindly provided me with a summary of Eva’s career which I found extremely interesting; not only
showing what an incredible and dynamic career she has had, but also for its insight in how paediatric
physiotherapy has changed over the past 40-50 years. We have decided, with his permission, to share this
with you in its entirety.
In this journal we publish a literature review of the Ponseti treatment for children with club feet followed by
a paper ‘putting the evidence into practice’. Ponseti is now recognised as the gold standard for treating club
feet and is generating a lot of interest amongst paediatric physiotherapists with more areas now offering
physiotherapy-led services. We also have an in depth look at orthotics and the current literature available in
relation to orthotics and biomechanics. There are papers from three of the physiotherapists who presented
at conference last year presenting more fully their work. Finally we have a report of a service that has been
set up for children with Down Syndrome looking at how outcomes for children have improved with this
approach to management and a single case study looking at integrated therapy.
I hope that with the assistance of the editorial board we will continue to produce a high quality journal and I
encourage you to keep sending articles in for publication. Please submit your papers for the November
edition of the Journal by email to va@apcp.org.uk by July 1st 2014
In the 1970s, Eva worked at The Vale School in Haringey for pupils with physical disabilities and associated
special educational needs, but her schemes appeared just as harebrained. To some people, adventure
activities are desert triathlons or hang gliding over volcanoes, but a weekend camping on the Isle of Wight
with a dozen severely handicapped children and no running water is a real extreme sport. School sports
days were just as challenging as the teachers and therapists were made to perform races that were designed
to make them appear less physically able than their pupils. Dedication to her children was unwavering.
One Christmas day a GP in Haringey phoned Eva concerned that the mother of one of her children had
walked out leaving the father to look after the disabled child. I remember that I spent most of that Christmas
day being dragged around the back streets of Haringey looking for the home of this unfortunate single
parent and finally eating Christmas lunch close to midnight.
By the 1980s Eva had moved to the Newcomen Centre at Guy’s Hospital where her academic career really
started as part of the complex neurodevelopmental disability multidisciplinary team specialising in
assessing, diagnosing and managing children with neurodevelopmental disorders. At a time when the
doctor always knew best, the high value that the consultant neurologists placed on Eva’s opinion was
remarkable. Senior paediatric neurologists, including Professor Brian Neville, were now listening to the
refugee whose father had refused to allow her to go to medical school despite her having secured a place. At
the same time she was visiting children in some of the most dangerous heart-sink estates in South London.
She was often met by parents who were incredulous at her bravery who rarely allowed her to walk back to
her mini unaccompanied.
In the 1990s her career took another diversion deeper into academia with an appointment at Southampton
University department of rehabilitation. Perhaps it was time to reflect on her practice and with the vision
that few possess, she chose to evaluate intensive physiotherapy and collaborative goal-setting on motor
function in children with cerebral palsy. She was supported and encouraged by Professor Lindsay McLellan,
whose work focused on adult rehabilitation following brain injuries. She completed her PhD in 1993 and it
amused her that this was the same year that I was awarded mine, and continued in post-doctoral studies as a
senior lecturer. All too few people continue to examine their own clinical practice and to question the benefit
of what they do. At the end of a lengthy career in paediatric physiotherapy that is exactly what Eva did;
establishing rigorous trials to evaluate the very interventions that she had spent the previous 30 years
performing. The usual unchallenging approach is to coast through the final years of your working life,
gradually winding down your practice. Eva’s final working decade was spent designing large multi-centre
intervention studies, applying for the research grants to support them, cajoling other physiotherapists into
participating in them and presenting and publishing the findings. She continued to encourage other
therapists to also pursue academic qualifications and careers by supervising MSc and PhD students and
lecturing globally. Whilst my father sought a peaceful retirement, he was dragged around the conference
halls of Europe and when lured into a month long holiday in Sri Lanka, found himself building equipment
for local disabled children.
After retiring from Southampton, she not only edited the 4th edition of Finnie’s Handling the Young Child
with Cerebral Palsy at Home, but made me write the chapter on complementary and alternative therapy in
CP when no one else was willing to! Typically she then gave all the proceeds from the book to Nancie Finnie
Charitable Trust. Finally the reader will know that she has been editor of the APCP journal for the last 3
years, holding editorial meetings in her Hampstead dining room, continually driving up the intellectual
quality of the manuscripts.
It has been a remarkable journey for an asylum seeker who went to primary school in London on her first
day during the Blitz, speaking only German.
2
3
LETTER TO THE EDITOR
16th November 2013
Peta Smith Consultant Neonatal Physiotherapist, LAPI Tutor UK
Adare Brady Consultant Neonatal Physiotherapist, LAPI Tutor UK
Dear Editor,
We are writing in response to an article published in the most recent edition of the APCP Journal Volume 4
Number 2 (2013) 26-33 - ‘A comparison of the Sensitivity and Specificity of 3 Neurological Assessments
Currently in Use on Neonatal Units’ by Jade Kant.
One statement we would like to correct in this article was that Joan Lacey was not herself directly clinically
involved in the 2004 study. This is wrongly stated in the article.
The Lacey Assessment of the Pre-Term Infant (LAPI) in its development has been used as the routine
neurological assessment of the preterm infants admitted to the Neonatal Intensive Care Unit at at Royal
Prince Alfred Hospital (RPAH) since 1978 and is carried out by the neonatal physiotherapists attached to the
Unit. Since the early 90’s Joan had no clinical involvement on the Unit, although she was appointed as
Honorary Consultant Physiotherapist to the Department of Newborn Care at RPAH, University Hospital of
Sydney, as one of the research team, a post she held until her death in April this year.
This clarified, we would also like to clarify some points made by the author regarding the LAPI in relation to
the study quoted in this article which was published in the Australian Journal of Physiotherapy 2004; 50:
137-144 by Joan Lacey herself and her co-authors Sian Rudge, Ingrid Rieger and David Osborn.
One of the advantages of the LAPI is that it has been developed over three decades of ongoing research by
Joan Lacey et al to improve its diagnostic accuracy. This ongoing research also ensured that the assessment
has been regularly reviewed and updated since its earliest form in 1978.
accuracy was greater than identification of IVH on CUSS in this population.
Comparison of the results of the neonatal assessments with three year outcome shows a good predictive
value for later CP or normality. Although assessment at 30 weeks postmenstrual age is too early for the
reliable identification of later developing abnormal features, clinical use by appropriately trained
physiotherapists in the neonatal intensive care unit and Level 2 nurseries would allow individual
positioning routines and advice for the baby at this age. This assessment is therefore more than just a
diagnostic / predictive tool, but also helps the specialist neonatal physiotherapist in clinical decision making
and allow for individual positioning routines and advice for the baby at this stage.
References
MC Butcher-Peuch, D J Hendserson Smart, D Holley, J L Lacey, and D A Edwards (1985): Relation between apnoea
duration and type andneurological status of preterm infants. Archives of Disease in Childhood, 1985, 60, 953-958
Lacey JL, Henderson-Smart DJ, Edwards D and Storey B (1985): The early development of head control in preterm
infants. Early Human Development 11: 199-212
Lacey JL, Henderson-Smart D, Edwards D, Storey B (1987): Neurological assessment of the preterm infant in the special
care nursery and the diagnostic significance of the asymmetrical tonic neck reflex. The Australian journal of Physiotherapy
33: 135-142
Lacey JL, Henderson-Smart DJ, Edwards D (1990): A longitudinal study of early leg postures of preterm infants.
Developmental Medicine and Child Neurology 32: 151-163
Lacey JL. Henderson-Smart DJ (1998) Assessment of preterm infants in the intensive-care unit to predict cerebral palsy
and motor outcome at 6 years. Developmental Medicine & Child Neurology: 40: 310-318.
Lacey JL, Rudge S, Rieger I and Osborn DA (2004): Assessment of neurological status in very preterm infants in neonatal
intensive care and prediction of cerebral palsy. Australian Journal of Physiotherapy 50: 137-144
Lacey JL, “Methodological inaccuracies created by incorrect interpretation of the Lacey assessment of preterm infants”
PHYSIOTHERAPY (2005) 91, 61-63
The purpose of the 2004 study was to determine the diagnostic accuracy of the LAPI to predict the later
normal motor outcome or cerebral palsy (CP) at 3 years of age in a cohort of extremely preterm infants and
to determine whether the assessment is accurate if it is performed at a very early preterm age (≤ 33 weeks
post menstrual age PMA) compared with later preterm ages (>33 weeks post PMA.)
The diagnostic accuracy of LAPI for CP at 3 years for the infants assessed ≤33 weeks PMA showed a
sensitivity of 57 and a specificity of 90, a positive predictive value PPV of 57 of and a negative predictive
value NPV of 95 for subsequent CP.
The diagnostic accuracy of LAPI for CP at 3 years for the infants assessed > 33 weeks PMA showed a
sensitivity 86, a specificity 83, PPV of 57 and NPV of 96 for subsequent CP, therefore much higher and so
more reliable for this cohort of infants, as the prediction for outcome was more accurate for infants when
they were assessed after 33 weeks PMA.
Cranial ultrasound scan (CUSS) data was restrospectively analysed with the presence of intraventricular
haemorrhage (IVH) was then compared to motor development. Twenty infants who developed CP did not
have an IVH. The diagnostic accuracy of IVH by CUSS at 3 years was 44% sensitivity, 87% specificity, 43%
PPV and 88% NPPV for CP less than the LAPI
This study showed the LAPI to have high diagnostic accuracy for prediction of subsequent CP by the
identification of abnormal features in infants > 33 weeks PMA and it is recommended that most infants
should be assessed using the LAPI after they reach 33 weeks PMA for the greatest reliability.
LAPI assessment at ≤ 33 weeks PMA is not as sensitive, however even at this very early age the diagnostic
4
5
LETTER TO THE EDITOR
16th November 2013
Peta Smith Consultant Neonatal Physiotherapist, LAPI Tutor UK
Adare Brady Consultant Neonatal Physiotherapist, LAPI Tutor UK
Dear Editor,
We are writing in response to an article published in the most recent edition of the APCP Journal Volume 4
Number 2 (2013) 26-33 - ‘A comparison of the Sensitivity and Specificity of 3 Neurological Assessments
Currently in Use on Neonatal Units’ by Jade Kant.
One statement we would like to correct in this article was that Joan Lacey was not herself directly clinically
involved in the 2004 study. This is wrongly stated in the article.
The Lacey Assessment of the Pre-Term Infant (LAPI) in its development has been used as the routine
neurological assessment of the preterm infants admitted to the Neonatal Intensive Care Unit at at Royal
Prince Alfred Hospital (RPAH) since 1978 and is carried out by the neonatal physiotherapists attached to the
Unit. Since the early 90’s Joan had no clinical involvement on the Unit, although she was appointed as
Honorary Consultant Physiotherapist to the Department of Newborn Care at RPAH, University Hospital of
Sydney, as one of the research team, a post she held until her death in April this year.
This clarified, we would also like to clarify some points made by the author regarding the LAPI in relation to
the study quoted in this article which was published in the Australian Journal of Physiotherapy 2004; 50:
137-144 by Joan Lacey herself and her co-authors Sian Rudge, Ingrid Rieger and David Osborn.
One of the advantages of the LAPI is that it has been developed over three decades of ongoing research by
Joan Lacey et al to improve its diagnostic accuracy. This ongoing research also ensured that the assessment
has been regularly reviewed and updated since its earliest form in 1978.
accuracy was greater than identification of IVH on CUSS in this population.
Comparison of the results of the neonatal assessments with three year outcome shows a good predictive
value for later CP or normality. Although assessment at 30 weeks postmenstrual age is too early for the
reliable identification of later developing abnormal features, clinical use by appropriately trained
physiotherapists in the neonatal intensive care unit and Level 2 nurseries would allow individual
positioning routines and advice for the baby at this age. This assessment is therefore more than just a
diagnostic / predictive tool, but also helps the specialist neonatal physiotherapist in clinical decision making
and allow for individual positioning routines and advice for the baby at this stage.
References
MC Butcher-Peuch, D J Hendserson Smart, D Holley, J L Lacey, and D A Edwards (1985): Relation between apnoea
duration and type andneurological status of preterm infants. Archives of Disease in Childhood, 1985, 60, 953-958
Lacey JL, Henderson-Smart DJ, Edwards D and Storey B (1985): The early development of head control in preterm
infants. Early Human Development 11: 199-212
Lacey JL, Henderson-Smart D, Edwards D, Storey B (1987): Neurological assessment of the preterm infant in the special
care nursery and the diagnostic significance of the asymmetrical tonic neck reflex. The Australian journal of Physiotherapy
33: 135-142
Lacey JL, Henderson-Smart DJ, Edwards D (1990): A longitudinal study of early leg postures of preterm infants.
Developmental Medicine and Child Neurology 32: 151-163
Lacey JL. Henderson-Smart DJ (1998) Assessment of preterm infants in the intensive-care unit to predict cerebral palsy
and motor outcome at 6 years. Developmental Medicine & Child Neurology: 40: 310-318.
Lacey JL, Rudge S, Rieger I and Osborn DA (2004): Assessment of neurological status in very preterm infants in neonatal
intensive care and prediction of cerebral palsy. Australian Journal of Physiotherapy 50: 137-144
Lacey JL, “Methodological inaccuracies created by incorrect interpretation of the Lacey assessment of preterm infants”
PHYSIOTHERAPY (2005) 91, 61-63
The purpose of the 2004 study was to determine the diagnostic accuracy of the LAPI to predict the later
normal motor outcome or cerebral palsy (CP) at 3 years of age in a cohort of extremely preterm infants and
to determine whether the assessment is accurate if it is performed at a very early preterm age (≤ 33 weeks
post menstrual age PMA) compared with later preterm ages (>33 weeks post PMA.)
The diagnostic accuracy of LAPI for CP at 3 years for the infants assessed ≤33 weeks PMA showed a
sensitivity of 57 and a specificity of 90, a positive predictive value PPV of 57 of and a negative predictive
value NPV of 95 for subsequent CP.
The diagnostic accuracy of LAPI for CP at 3 years for the infants assessed > 33 weeks PMA showed a
sensitivity 86, a specificity 83, PPV of 57 and NPV of 96 for subsequent CP, therefore much higher and so
more reliable for this cohort of infants, as the prediction for outcome was more accurate for infants when
they were assessed after 33 weeks PMA.
Cranial ultrasound scan (CUSS) data was restrospectively analysed with the presence of intraventricular
haemorrhage (IVH) was then compared to motor development. Twenty infants who developed CP did not
have an IVH. The diagnostic accuracy of IVH by CUSS at 3 years was 44% sensitivity, 87% specificity, 43%
PPV and 88% NPPV for CP less than the LAPI
This study showed the LAPI to have high diagnostic accuracy for prediction of subsequent CP by the
identification of abnormal features in infants > 33 weeks PMA and it is recommended that most infants
should be assessed using the LAPI after they reach 33 weeks PMA for the greatest reliability.
LAPI assessment at ≤ 33 weeks PMA is not as sensitive, however even at this very early age the diagnostic
4
5
APCP Journal Volume 5 Number 1 (2014) 7-18
From Stable Standing to Rock and Roll Walking (Part 1)
The Importance of Alignment, Proportion and Profiles
Elaine Owen MBE MSc SRP MSCP
Child Development Centre, Bangor
Author’s email: lugger@talk21.com
________________________________________________________________________________
Introduction
Orthoses are one of the most commonly used
interventions with children. All interventions
should be prescribed optimally if they are to achieve
the desired outcomes in the required domains of the
International Classification of Function Disability
and Health, Children and Youth Version (ICF-CY)
(World Health Organisation, 2007; Majnemer 2012).
To prescribe orthotic interventions optimally they
need to be determined and described in a manner
analogous to drug interventions (Morris and Condie
2009). Firstly, by the name of the orthosis, as
defined by the International Standards Organisation
(ISO 8549-3 1989); secondly, by the dosage, which in
the case of orthoses will include the design,
alignments, proportions and profiles of the
prescription; and finally by the frequency of
administration, which is a description of the
activities for which the orthosis will be used and for
how long it will be worn each day or week.
Many aspects of orthotic provision are defined by
the International Standards Organisation. ISO 85491:1989 gives the following definitions:
ORTHOTICS is the science and art involved in
treating patients by the use of an orthosis.
AN ORTHOSIS OR ORTHOTIC DEVICE is an
externally applied device used to modify the
structural and functional characteristics of the
neuromuscular and skeletal systems.
AN ANKLE FOOT ORTHOSIS (AFO) is one that
encompasses the ankle joint and the whole or part
of the foot. This definition includes a range of AFO
designs including: fixed ankle designs where the
ankle joint alignment is set at one angle within the
AFO; flexible, hinged or jointed AFO designs which
allow full or a limited range of movement into
dorsiflexion or plantarflexion; and supramalleolar
orthoses. Integral to the function of any AFO is the
design of the footwear that is worn with the AFO, so
the overall orthosis is now called an AFO Footwear
Combination (AFOFC), to give equal emphasis to
both parts of the prescription.
6
Describing the features of orthoses in all three planes
is essential but this paper concentrates on some key
sagittal plane features of AFOFC prescriptions.
These will include principal alignments, principal
proportions and principal footwear design features,
which are pitch, stiffness and profiles.
There has been much debate in the literature about
which AFOFC designs to use. The optimum AFOFC
design should be selected according to desired
outcomes for the patient. Clinical algorithms can
help determine optimal designs and several are
available. A clinical algorithm for designing,
aligning and tuning AFOFCs based on shank
kinematics is published elsewhere (Owen 2005;
Owen 2010). An algorithm for determining the
optimum Angle of the Ankle in the AFO (AA-AFO)
in a fixed ankle AFOFC (Owen 2005; Owen 2010) is
reproduced in this paper. An algorithm for
determining whether a dorsiflexion free AFOFC is
optimal (Owen, 2013) is also presented here. In
order to become confident in using the latter two
algorithms it is easier to start with determining the
alignments of fixed ankle AFOs and then look at the
criteria for dorsiflexion- free AFO designs.
Principal Alignments
Definitions of alignments are given in ISO 8551:2003
ALIGNMENT - establishment of the position in
space of the components of the prosthesis or orthosis
relative to each other and the patient.
ALIGNMENT OF A JOINT - the spatial
relationship between the skeletal segments, which
comprise the joint.
ALIGNMENT OF A SKELETAL SEGMENT - the
spatial relationship between the ends of a segment.
There are many alignments in all three planes within
an AFOFC. Two principal sagittal alignments are the
Angle of the Ankle in the AFO (AA-AFO) and the
Shank to Vertical Angle of the AFOFC (SVA-AFOFC)
(Owen, 2002; Owen, 2004; Owen, 2005; Owen, 2010;
Bowers and Ross, 2009; Ridgewell, 2010; Eddison
and Chockalingam, 2013). Figure 1 illustrates the
nine possible configurations of these two alignments
(Owen 2004, 2010).
7
From Stable Standing to Rock and Roll Walking (Part 1)
The Importance of Alignment, Proportion and Profiles
Elaine Owen MBE MSc SRP MSCP
Child Development Centre, Bangor
Author’s email: lugger@talk21.com
________________________________________________________________________________
Introduction
Orthoses are one of the most commonly used
interventions with children. All interventions
should be prescribed optimally if they are to achieve
the desired outcomes in the required domains of the
International Classification of Function Disability
and Health, Children and Youth Version (ICF-CY)
(World Health Organisation, 2007; Majnemer 2012).
To prescribe orthotic interventions optimally they
need to be determined and described in a manner
analogous to drug interventions (Morris and Condie
2009). Firstly, by the name of the orthosis, as
defined by the International Standards Organisation
(ISO 8549-3 1989); secondly, by the dosage, which in
the case of orthoses will include the design,
alignments, proportions and profiles of the
prescription; and finally by the frequency of
administration, which is a description of the
activities for which the orthosis will be used and for
how long it will be worn each day or week.
Many aspects of orthotic provision are defined by
the International Standards Organisation. ISO 85491:1989 gives the following definitions:
ORTHOTICS is the science and art involved in
treating patients by the use of an orthosis.
AN ORTHOSIS OR ORTHOTIC DEVICE is an
externally applied device used to modify the
structural and functional characteristics of the
neuromuscular and skeletal systems.
AN ANKLE FOOT ORTHOSIS (AFO) is one that
encompasses the ankle joint and the whole or part
of the foot. This definition includes a range of AFO
designs including: fixed ankle designs where the
ankle joint alignment is set at one angle within the
AFO; flexible, hinged or jointed AFO designs which
allow full or a limited range of movement into
dorsiflexion or plantarflexion; and supramalleolar
orthoses. Integral to the function of any AFO is the
design of the footwear that is worn with the AFO, so
the overall orthosis is now called an AFO Footwear
Combination (AFOFC), to give equal emphasis to
both parts of the prescription.
6
Describing the features of orthoses in all three planes
is essential but this paper concentrates on some key
sagittal plane features of AFOFC prescriptions.
These will include principal alignments, principal
proportions and principal footwear design features,
which are pitch, stiffness and profiles.
There has been much debate in the literature about
which AFOFC designs to use. The optimum AFOFC
design should be selected according to desired
outcomes for the patient. Clinical algorithms can
help determine optimal designs and several are
available. A clinical algorithm for designing,
aligning and tuning AFOFCs based on shank
kinematics is published elsewhere (Owen 2005;
Owen 2010). An algorithm for determining the
optimum Angle of the Ankle in the AFO (AA-AFO)
in a fixed ankle AFOFC (Owen 2005; Owen 2010) is
reproduced in this paper. An algorithm for
determining whether a dorsiflexion free AFOFC is
optimal (Owen, 2013) is also presented here. In
order to become confident in using the latter two
algorithms it is easier to start with determining the
alignments of fixed ankle AFOs and then look at the
criteria for dorsiflexion- free AFO designs.
Principal Alignments
Definitions of alignments are given in ISO 8551:2003
ALIGNMENT - establishment of the position in
space of the components of the prosthesis or orthosis
relative to each other and the patient.
ALIGNMENT OF A JOINT - the spatial
relationship between the skeletal segments, which
comprise the joint.
ALIGNMENT OF A SKELETAL SEGMENT - the
spatial relationship between the ends of a segment.
There are many alignments in all three planes within
an AFOFC. Two principal sagittal alignments are the
Angle of the Ankle in the AFO (AA-AFO) and the
Shank to Vertical Angle of the AFOFC (SVA-AFOFC)
(Owen, 2002; Owen, 2004; Owen, 2005; Owen, 2010;
Bowers and Ross, 2009; Ridgewell, 2010; Eddison
and Chockalingam, 2013). Figure 1 illustrates the
nine possible configurations of these two alignments
(Owen 2004, 2010).
7
E. Owen / APCP Journal Volume 5 Number 1 (2014) 7-18
Figure 1 - Nine theoretical configurations of the AA-AFO
and SVA-AFOFC (Owen 2004; Owen, 2010)
Until recently these two alignments have been
largely confused or ignored in orthotic science
(Owen, 2004; Ridgewell et al, 2010). This may be
because similar language was used to describe these
alignments, the terms dorsiflexion, plantigrade and
plantarflexion being applied to both. Reviews of the
literature reveal that only a very small proportion of
publications from the 1970s to present have
differentiated between the two alignments, included
information about alignments used and described
how those alignments were optimised (Owen, 2004;
Bowers and Ross, 2009; Ridgewell et al, 2010;
Eddison and Chockalingam, 2013). These reviews
acknowledged that differentiating between and
stating both alignments, and also how they were
optimised, is essential for both clinical practice and
future research trials.
New terminology has recently emerged and the
following terms and definitions are now accepted
internationally (Owen, 2004; Meadows et al, 2008;
Owen, 2010; Ridgewell et al, 2010; Eddison and
Chockalingam, 2013).
ANGLE OF THE ANKLE IN THE ANKLE-FOOT
ORTHOSIS (AA-AFO) - the angle between the line
of the shank relative to the line of the foot. The line
of the foot is defined as the line between the base of
the heel and the most inferior point of the foot
under the fifth metatarsal head. It is described in
degrees of plantarflexion, dorsiflexion or as
plantigrade (Owen, 2004).
SHANK TO VERTICAL ANGLE OF THE AFO
FOOTWEAR COMBINATION (SVA-AFOFC) - the
angle of the line of the shank relative to the vertical
8
when standing in the AFOFC with weight equally
distributed between the heel and forefoot. When
measured in the sagittal plane the SVA is described
as inclined if the shank is leaning forward of the
vertical and reclined if it is leaning backwards from
the vertical. It is described in degrees from the
vertical, 0° describing the vertical (Owen, 2004).
release gastrocnemius length, or both these
scenarios will occur. None of these are desirable as
they will compromise gait, prevent optimum
development of the bony alignment of the foot and
prevent the MTU being used at optimal length. If
AFOFCs are only being used with flexed knees, an
assessment of soleus length alone is sufficient.
These definitions refer to AFOFCs with fixed ankle
designs. The SVA of a flexible or hinged AFOFC can
be measured but as the SVA can vary, because of the
variability of ankle joint alignment possible in these
designs, an additional specification is required in
the definition, for the ankle joint alignment when
the measure is taken.
Calf MTU stiffness
MTU stiffness will also determine if knees will
extend or bony alignment of the foot will be
compromised. (Sanger et al, 2003 ; Lieber, 2010). On
clinical examination, MTU length may be available
but the stiffness or hypertonia may be such that the
AA-AFO has to be adjusted to obtain knee extension
and/or maintain bony alignment of the foot. As we
know, hypertonia is speed dependant so when
AFOs will be used in gait, taking hypertonus into
account is very important. Even when walking
slowly joint movements and consequent stretch on
MTUs can be fast.
Optimising the AA-AFO and SVA-AFOFC is
essential to any orthotic prescription (Owen, 2004;
Owen, 2010; Bowers and Ross, 2009; Ridgewell et al,
2010; Eddison and Chockalingam, 2013). However
optimising these alignments alone will not
necessarily produce optimum kinematics and
kinetics in standing, stepping or gait. At our centre,
which uses a video vector gait laboratory to
evaluate the effects of orthoses, we have found that
for this to occur all the other alignments, designs,
proportions and profiles of the AFOFC in the
sagittal plane need to be optimum, as do those in
the coronal and transverse plane, and also it is
essential to equalise leg lengths in orthotic
prescriptions.
Determining the Optimal AA-AFO
The sagittal AA-AFO describes the alignment of the
foot segment relative to the shank segment within
the AFO. The optimum AA-AFO should be
determined for each leg of each patient. To be able
to do this we need to be conversant with the factors
that might help us best determine this angle, which
are the length and stiffness of musculotendinous
units (MTU) and the desired triplanar bony
alignment of the foot (Owen, 2005). In addition leg
lengths come into the consideration and also the
activity for which they will be used and whether
that activity requires knee extension.
Calf MTU length
AFOFCs are most often used in circumstances when
the knee will be extended, in standing or walking,
so the length and stiffness of the gastrocnemius
should be taken into account. Gastrocnemius is a
tri-jointed MTU crossing the knee, ankle and
subtalar joints. Setting the AA-AFO without due
regard for the available gastrocnemius length will
result in insufficient length of gastrocnemius being
available to allow knee extension, or
pronation/supination of the foot will occur to
Bony alignment of the foot
It is essential that children’s feet develop to acquire
optimal triplanar bony alignment. All feet, and
children’s feet in particular, will ‘escape’ to triplanar
pronation or supination, in order to achieve greater
degrees of dorsiflexion, if there is insufficient MTU
length or excessive MTU stiffness in the calf MTUs.
Assessing the length and stiffness of the calf MTUs
is therefore essential if the AA-AFO is to be set
optimally for maintaining optimal bony alignment
of the foot. Neutral alignment of the foot, in regard
to triplanar pronation or supination, may only be
achieved when the foot is optimally plantarflexed.
Fixed dorsiflexed ankles
Some children with myelomeningocele, and other
rare disorders, may have fixed dorsiflexion angles at
the ankles. If this is the case then this must be taken
into account when determining the AA-AFO.
The algorithm for determining the optimum AAAFO, (Figure 2) gives consideration to all these
factors and any risks associated with using chosen
alignments (Owen 2005; Owen, 2010). In addition
there are opportunities for interventions if required
throughout the algorithm. An optimally designed
and aligned AFOFC may be the chosen intervention
to increase MTU length, reduce MTU stiffness and
develop optimal bony alignment of the foot. To be
able to determine whether intervention is needed to
increase calf MTU length the normative data of
MTU lengths for age are required. Reimers et al
(1995) documented the length of the triceps surae
MTU, measured as the angle of the lateral border of
the foot relative to the axis of the lower leg. They
measured ‘with the knee extended and the hindfoot
in a neutral position and the forefoot sufficiently
adducted to bring the talus into a neutral position
relative to the calcaneus’. They measured 759
typically developing children aged 3 to 17 years.
The proportion of children with one or both triceps
surae that could only be brought to plantigrade rose
from 24% to 62% between the ages of 3 and 17 years.
In 13% of adolescents one or both feet could only
achieve 5° plantarflexion. They also found an
association between short triceps surae and flat feet
in the older group.
If the algorithm for determining the AA-AFO is
followed, a plantarflexed AA-AFO is the only
recommendation when patients have a short or
excessively stiff gastrocnemius or a foot that will
only align in neutral pronation/supination when
the ankle is plantarflexed. Any alternative would
compromise the triplanar bony alignment of the foot
or prevent the knee from extending. Compromising
the foot has adverse consequences for the
development of normal bony structure of the foot,
comfort and skin viability. Also if the bony
alignment of the foot is compromised the calf MTUs
will not be optimally stretched as the knee extends
and foot progression angles may become excessively
rotated, leading to reduced toe levers and adverse
kinematics and kinetics at the knee and hip.
Despite all these good reasons to use a plantarflexed
AA-AFO when it is deemed essential (Owen, 2005;
Owen, 2010; Bowers and Ross, 2009), until recently
there has been a widely held view that aligning the
ankle in plantarflexion in an AFO is not acceptable.
This dominant view has prevailed in the literature
(Owen, 2004; Bowers and Ross, 2009). There is a
notable exception, Nuzzo (1980, 1983, 1986)
expounds the use of plantarflexion where required
and extols its therapeutic effects.
Exploration of the possible reasons why
plantarflexed alignments of the ankle in the AFO
has been resisted may help understand why this
opinion has been held and why it may now be
redundant. Firstly, there has been a fear that using
plantarflexed AA-AFO will always lead to MTU
shortening. The reality is that if the MTU is short
enough to require a plantarflexed AA-AFO there is
no alternative, especially if knee extension is
required. Knee extension is not only essential to
production of normal kinematics and kinetics in
standing and walking but it also produces one of the
main therapeutic effects on the MTU, which is
allowing the MTU to stretch to its optimal length as
the knee extends. This may prevent the MTU from
shortening or maintain, or increase, its length.
Additional strategies may also be used to
complement AFOFCs with plantarflexed AA-AFO if
9
Figure 1 - Nine theoretical configurations of the AA-AFO
and SVA-AFOFC (Owen 2004; Owen, 2010)
Until recently these two alignments have been
largely confused or ignored in orthotic science
(Owen, 2004; Ridgewell et al, 2010). This may be
because similar language was used to describe these
alignments, the terms dorsiflexion, plantigrade and
plantarflexion being applied to both. Reviews of the
literature reveal that only a very small proportion of
publications from the 1970s to present have
differentiated between the two alignments, included
information about alignments used and described
how those alignments were optimised (Owen, 2004;
Bowers and Ross, 2009; Ridgewell et al, 2010;
Eddison and Chockalingam, 2013). These reviews
acknowledged that differentiating between and
stating both alignments, and also how they were
optimised, is essential for both clinical practice and
future research trials.
New terminology has recently emerged and the
following terms and definitions are now accepted
internationally (Owen, 2004; Meadows et al, 2008;
Owen, 2010; Ridgewell et al, 2010; Eddison and
ANGLE OF THE ANKLE IN THE ANKLE-FOOT
ORTHOSIS (AA-AFO) - the angle between the line
of the shank relative to the line of the foot. The line
of the foot is defined as the line between the base of
the heel and the most inferior point of the foot
under the fifth metatarsal head. It is described in
degrees of plantarflexion, dorsiflexion or as
plantigrade (Owen, 2004).
SHANK TO VERTICAL ANGLE OF THE AFO
FOOTWEAR COMBINATION (SVA-AFOFC) - the
angle of the line of the shank relative to the vertical
8
when standing in the AFOFC with weight equally
distributed between the heel and forefoot. When
measured in the sagittal plane the SVA is described
as inclined if the shank is leaning forward of the
vertical and reclined if it is leaning backwards from
the vertical. It is described in degrees from the
vertical, 0° describing the vertical (Owen, 2004).
release gastrocnemius length, or both these
scenarios will occur. None of these are desirable as
they will compromise gait, prevent optimum
development of the bony alignment of the foot and
prevent the MTU being used at optimal length. If
AFOFCs are only being used with flexed knees, an
assessment of soleus length alone is sufficient.
These definitions refer to AFOFCs with fixed ankle
designs. The SVA of a flexible or hinged AFOFC can
be measured but as the SVA can vary, because of the
variability of ankle joint alignment possible in these
designs, an additional specification is required in
the definition, for the ankle joint alignment when
the measure is taken.
Calf MTU stiffness
MTU stiffness will also determine if knees will
extend or bony alignment of the foot will be
compromised. (Sanger et al, 2003 ; Lieber, 2010). On
clinical examination, MTU length may be available
but the stiffness or hypertonia may be such that the
AA-AFO has to be adjusted to obtain knee extension
and/or maintain bony alignment of the foot. As we
know, hypertonia is speed dependant so when
AFOs will be used in gait, taking hypertonus into
account is very important. Even when walking
slowly joint movements and consequent stretch on
MTUs can be fast.
Optimising the AA-AFO and SVA-AFOFC is
essential to any orthotic prescription (Owen, 2004;
Owen, 2010; Bowers and Ross, 2009; Ridgewell et al,
2010; Eddison and Chockalingam, 2013). However
optimising these alignments alone will not
necessarily produce optimum kinematics and
kinetics in standing, stepping or gait. At our centre,
which uses a video vector gait laboratory to
evaluate the effects of orthoses, we have found that
for this to occur all the other alignments, designs,
proportions and profiles of the AFOFC in the
sagittal plane need to be optimum, as do those in
the coronal and transverse plane, and also it is
essential to equalise leg lengths in orthotic
prescriptions.
Determining the Optimal AA-AFO
The sagittal AA-AFO describes the alignment of the
foot segment relative to the shank segment within
the AFO. The optimum AA-AFO should be
determined for each leg of each patient. To be able
to do this we need to be conversant with the factors
that might help us best determine this angle, which
are the length and stiffness of musculotendinous
units (MTU) and the desired triplanar bony
alignment of the foot (Owen, 2005). In addition leg
lengths come into the consideration and also the
activity for which they will be used and whether
that activity requires knee extension.
Calf MTU length
AFOFCs are most often used in circumstances when
the knee will be extended, in standing or walking,
so the length and stiffness of the gastrocnemius
should be taken into account. Gastrocnemius is a
tri-jointed MTU crossing the knee, ankle and
subtalar joints. Setting the AA-AFO without due
regard for the available gastrocnemius length will
result in insufficient length of gastrocnemius being
available to allow knee extension, or
pronation/supination of the foot will occur to
Bony alignment of the foot
It is essential that children’s feet develop to acquire
optimal triplanar bony alignment. All feet, and
children’s feet in particular, will ‘escape’ to triplanar
pronation or supination, in order to achieve greater
degrees of dorsiflexion, if there is insufficient MTU
length or excessive MTU stiffness in the calf MTUs.
Assessing the length and stiffness of the calf MTUs
is therefore essential if the AA-AFO is to be set
optimally for maintaining optimal bony alignment
of the foot. Neutral alignment of the foot, in regard
to triplanar pronation or supination, may only be
achieved when the foot is optimally plantarflexed.
Fixed dorsiflexed ankles
Some children with myelomeningocele, and other
rare disorders, may have fixed dorsiflexion angles at
the ankles. If this is the case then this must be taken
into account when determining the AA-AFO.
The algorithm for determining the optimum AAAFO, (Figure 2) gives consideration to all these
factors and any risks associated with using chosen
alignments (Owen 2005; Owen, 2010). In addition
there are opportunities for interventions if required
throughout the algorithm. An optimally designed
and aligned AFOFC may be the chosen intervention
to increase MTU length, reduce MTU stiffness and
develop optimal bony alignment of the foot. To be
able to determine whether intervention is needed to
increase calf MTU length the normative data of
MTU lengths for age are required. Reimers et al
(1995) documented the length of the triceps surae
MTU, measured as the angle of the lateral border of
the foot relative to the axis of the lower leg. They
measured ‘with the knee extended and the hindfoot
in a neutral position and the forefoot sufficiently
adducted to bring the talus into a neutral position
relative to the calcaneus’. They measured 759
typically developing children aged 3 to 17 years.
The proportion of children with one or both triceps
surae that could only be brought to plantigrade rose
from 24% to 62% between the ages of 3 and 17 years.
In 13% of adolescents one or both feet could only
achieve 5° plantarflexion. They also found an
association between short triceps surae and flat feet
in the older group.
If the algorithm for determining the AA-AFO is
followed, a plantarflexed AA-AFO is the only
recommendation when patients have a short or
excessively stiff gastrocnemius or a foot that will
only align in neutral pronation/supination when
the ankle is plantarflexed. Any alternative would
compromise the triplanar bony alignment of the foot
or prevent the knee from extending. Compromising
the foot has adverse consequences for the
development of normal bony structure of the foot,
comfort and skin viability. Also if the bony
alignment of the foot is compromised the calf MTUs
will not be optimally stretched as the knee extends
and foot progression angles may become excessively
rotated, leading to reduced toe levers and adverse
kinematics and kinetics at the knee and hip.
Despite all these good reasons to use a plantarflexed
AA-AFO when it is deemed essential (Owen, 2005;
Owen, 2010; Bowers and Ross, 2009), until recently
there has been a widely held view that aligning the
ankle in plantarflexion in an AFO is not acceptable.
This dominant view has prevailed in the literature
(Owen, 2004; Bowers and Ross, 2009). There is a
notable exception, Nuzzo (1980, 1983, 1986)
expounds the use of plantarflexion where required
and extols its therapeutic effects.
Exploration of the possible reasons why
plantarflexed alignments of the ankle in the AFO
has been resisted may help understand why this
opinion has been held and why it may now be
redundant. Firstly, there has been a fear that using
plantarflexed AA-AFO will always lead to MTU
shortening. The reality is that if the MTU is short
enough to require a plantarflexed AA-AFO there is
no alternative, especially if knee extension is
required. Knee extension is not only essential to
production of normal kinematics and kinetics in
standing and walking but it also produces one of the
main therapeutic effects on the MTU, which is
allowing the MTU to stretch to its optimal length as
the knee extends. This may prevent the MTU from
shortening or maintain, or increase, its length.
Additional strategies may also be used to
complement AFOFCs with plantarflexed AA-AFO if
9
the AFOFC intervention is not sufficiently successful
in itself. Secondly, the AA-AFO and SVA have not
been differentiated well and, coupled with a belief
that a vertical alignment of the AFOFC is required
for both standing and gait, this has lead to a belief
that 90° AA-AFO is the only way to achieve a
vertical alignment. It has not been well understood
that any SVA alignment can be achieved with any
AA-AFO and that inclined alignments of SVAs offer
the best chance of achieving optimum standing
balance, kinematics and kinetics in standing,
stepping and gait, especially if knee and hip
extension are goals of interventions (Owen 2004;
Owen, 2010).
Leg lengths should be equalised in orthotic
prescriptions. Using different AA-AFOs can often
be a mechanism to achieve this, wholly or partially.
This is because the shorter leg is often the more
neurologically affected and the MTUs may be
shorter or stiffer or bony alignment considerations
may require a different AA-AFO.
The determination of the optimum AA-AFO is
largely made from clinical examination, which is not
the case for determining the optimal SVA alignment
of an AFOFC. This is made by undertaking trials of
the activity for which the AFOFC is intended to be
used (Owen, 2004; Owen, 2010; Eddisson and
Determining the Optimal SVA-AFOFC
The optimal SVA-AFOFC should be determined for
each leg and the activities for which the AFOFC will
be used. The SVA-AFOFC used for weight bearing
activities has been defined. Determining the
optimal SVA is done by trials of the required
activities. A number of terms have been used in the
literature in regard to optimising, tuning and
aligning orthoses. To establish clarity definitions
are required.
TUNING - the dictionary definition of the word
‘tuning’ is ‘to adjust for optimum performance’,
such as tuning a car engine or a musical instrument.
A definition of tuning an AFOFC can be derived
from this.
context. Biomechanical optimisation has the
broadest context as it covers designing, aligning
and tuning in all three planes. Tuning has the next
broadest context as it involves fine adjustment of
any part of the design or any alignment during
activities and it also refers to any adjustment in any
plane. Static and dynamic alignment usually only
refer to optimally aligning the sagittal SVA.
It is essential to optimise the SVA-AFOFC because
SVA alignment affects more proximal segment
alignments, in both standing and walking. Figure 3
shows nine standing conditions, all with accurate
human segment proportions and the foot horizontal
on the floor (Owen, 2004; Owen, 2010).
TUNING AN AFOFC - the process whereby fine
adjustments are made to the design and alignment
of the AFOFC in order to optimise its performance
during a particular activity such as sitting,
standing, transferring, stepping, walking, running,
climbing stairs (Owen, 2010; Eddison and
BIOMECHANICAL OPTIMISATION - the
process of designing, aligning and tuning an
AFOFC in order to optimise its performance
(Owen, 2010; Eddison and Chockalingam, 2013).
ISO 8549-1(1989) gives definitions of three terms
commonly used in prosthetic science but, until
recently less used in orthotic science.
BENCH ASSEMBLY AND ALIGNMENT assembly and alignment of the components of a
prosthesis or orthosis in accordance with the
characteristics and with previously acquired data
regarding the patient.
STATIC ALIGNMENT - process whereby the
bench alignment is refined while the prosthesis or
orthosis is being worn by the stationary patient.
Figure 2 - Clinical algorithm for determining the sagittal angle of the ankle in an ankle-foot orthosis footwear combination
(Owen 2005; Owen, 2010)
10
DYNAMIC ALIGNMENT - process whereby the
alignment of the prosthesis or orthosis is optimised
by using observations of the movement pattern of
the patient.
Figure 3 - Shank kinematics dictate proximal segment
kinematics and GRF alignment (Owen, 2004; Owen, 2010)
Static alignment is therefore the process of setting
or resetting the SVA of the AFOFC while the patient
is static in standing, and dynamic alignment is the
process of assessing whether the set SVA alignment
has produced the optimal results. The terms
‘tuning’ and ‘biomechanical optimisation’ also
apply to the process of setting and determining the
optimal SVA alignment, but they have a wider
Three SVA alignments are illustrated; vertical, 1012° incline, 20° incline. The three SVA conditions
are combined with three possible alignments of the
thigh; reclined, vertical and inclined. In standing,
swaying, stepping and walking translation of a
vertical trunk is required. The optimal SVA
alignment that allows forward and backward trunk
translation is 10-12° incline. With this alignment it
is possible to move the thigh from a reclined to an
11
the AFOFC intervention is not sufficiently successful
in itself. Secondly, the AA-AFO and SVA have not
been differentiated well and, coupled with a belief
that a vertical alignment of the AFOFC is required
for both standing and gait, this has lead to a belief
that 90° AA-AFO is the only way to achieve a
vertical alignment. It has not been well understood
that any SVA alignment can be achieved with any
AA-AFO and that inclined alignments of SVAs offer
the best chance of achieving optimum standing
balance, kinematics and kinetics in standing,
stepping and gait, especially if knee and hip
extension are goals of interventions (Owen 2004;
Owen, 2010).
Leg lengths should be equalised in orthotic
prescriptions. Using different AA-AFOs can often
be a mechanism to achieve this, wholly or partially.
This is because the shorter leg is often the more
neurologically affected and the MTUs may be
shorter or stiffer or bony alignment considerations
may require a different AA-AFO.
The determination of the optimum AA-AFO is
largely made from clinical examination, which is not
the case for determining the optimal SVA alignment
of an AFOFC. This is made by undertaking trials of
the activity for which the AFOFC is intended to be
used (Owen, 2004; Owen, 2010; Eddisson and
Determining the Optimal SVA-AFOFC
The optimal SVA-AFOFC should be determined for
each leg and the activities for which the AFOFC will
be used. The SVA-AFOFC used for weight bearing
activities has been defined. Determining the
optimal SVA is done by trials of the required
activities. A number of terms have been used in the
literature in regard to optimising, tuning and
aligning orthoses. To establish clarity definitions
are required.
TUNING - the dictionary definition of the word
‘tuning’ is ‘to adjust for optimum performance’,
such as tuning a car engine or a musical instrument.
A definition of tuning an AFOFC can be derived
from this.
context. Biomechanical optimisation has the
broadest context as it covers designing, aligning
and tuning in all three planes. Tuning has the next
broadest context as it involves fine adjustment of
any part of the design or any alignment during
activities and it also refers to any adjustment in any
plane. Static and dynamic alignment usually only
refer to optimally aligning the sagittal SVA.
It is essential to optimise the SVA-AFOFC because
SVA alignment affects more proximal segment
alignments, in both standing and walking. Figure 3
shows nine standing conditions, all with accurate
human segment proportions and the foot horizontal
on the floor (Owen, 2004; Owen, 2010).
TUNING AN AFOFC - the process whereby fine
adjustments are made to the design and alignment
of the AFOFC in order to optimise its performance
during a particular activity such as sitting,
standing, transferring, stepping, walking, running,
climbing stairs (Owen, 2010; Eddison and
BIOMECHANICAL OPTIMISATION - the
process of designing, aligning and tuning an
AFOFC in order to optimise its performance
(Owen, 2010; Eddison and Chockalingam, 2013).
ISO 8549-1(1989) gives definitions of three terms
commonly used in prosthetic science but, until
recently less used in orthotic science.
BENCH ASSEMBLY AND ALIGNMENT assembly and alignment of the components of a
prosthesis or orthosis in accordance with the
characteristics and with previously acquired data
regarding the patient.
STATIC ALIGNMENT - process whereby the
bench alignment is refined while the prosthesis or
orthosis is being worn by the stationary patient.
Figure 2 - Clinical algorithm for determining the sagittal angle of the ankle in an ankle-foot orthosis footwear combination
(Owen 2005; Owen, 2010)
10
DYNAMIC ALIGNMENT - process whereby the
alignment of the prosthesis or orthosis is optimised
by using observations of the movement pattern of
the patient.
Figure 3 - Shank kinematics dictate proximal segment
kinematics and GRF alignment (Owen, 2004; Owen, 2010)
Static alignment is therefore the process of setting
or resetting the SVA of the AFOFC while the patient
is static in standing, and dynamic alignment is the
process of assessing whether the set SVA alignment
has produced the optimal results. The terms
‘tuning’ and ‘biomechanical optimisation’ also
apply to the process of setting and determining the
optimal SVA alignment, but they have a wider
Three SVA alignments are illustrated; vertical, 1012° incline, 20° incline. The three SVA conditions
are combined with three possible alignments of the
thigh; reclined, vertical and inclined. In standing,
swaying, stepping and walking translation of a
vertical trunk is required. The optimal SVA
alignment that allows forward and backward trunk
translation is 10-12° incline. With this alignment it
is possible to move the thigh from a reclined to an
11
inclined position, and vice versa, and translate a
vertical trunk. It is not possible to achieve this with
the other 2 SVA alignments. With a vertical SVA the
thigh cannot incline without knee hyperextension
and with SVA 20° incline the thigh cannot become
inclined as this would bring the centre of mass
outside the base of support. Of course it would be
possible to incline a thigh if the base of support
were longer, so manipulating the length of a foot, or
‘effective foot’, can be helpful in rehabilitation. In
both standing and walking, moving the thigh to an
inclined position while maintaining an inclined
shank and vertical trunk creates hip and knee
extension and stabilising hip and knee external
extending moments. In standing, stepping and
walking demonstrated by an able bodied person a
10-12° inclined shank is the optimal SVA to achieve
this, for a number of reasons (Owen, 2010).
However, when optimising SVA alignments of
AFOFCs, an SVA of more than 12° incline may be
needed if the patient hyper-extends the knees or if
they have excessive stiffness at the hip and knee
joints. In the latter case this is because a more
inclined position of the SVA enables the thigh to
become vertical or inclined. All SVA alignments,
and especially those that are more inclined than 12°,
need to be coupled with the optimum length of toe
lever to have a positive effect.
SVA Guidelines
There is limited research that provides guidelines
for optimal SVA alignments for children and adults
(Appendix 1). Early guidelines were justified by a
theoretical perspective or observational gait analysis
rather than from actual kinematic and kinetic
tuning, and usually just one SVA alignment was
suggested. Only recently is there an emerging
evidence for optimal SVA alignments obtained from
gait laboratories. There is also an increasing
understanding that the SVA needs to be determined
for each leg of each patient as it will be dependant
on the clinical condition and the type of gait
pathology, and that the optimum footwear designs
are also required (Owen, 2004; Owen et al, 2004;
Meadows et al, 2008; Bowers and Ross, 2009;
Ridgwell et al, 2010; Eddison and Chockalingam,
2013).
Principal Proportions
Homo sapiens evolved from early hominids who
were the first non feathered bi-pedals. Early
hominids had long trunks, short legs, walked with a
flexed gait, had an unstable mid-foot and no valgus
alignment at the knees. All these elements meant
that walking on two limbs required a lot of energy.
Homo sapiens evolved a more efficient gait, which
12
enabled walking over longer distances and carrying
of objects. We evolved longer legs and shorter
trunks, a gait that has extension at both knees and
hips or ‘strider gait’, a stable mid-foot, a toe lever
and valgus at the knees.
The proportion of the segments of the lower limb
and the trunk dictate the kinematics and kinetics of
normal human gait. The lengths of all the body
segments at all ages are documented (Tilley, 2002).
It is interesting to note that the segment proportions
do not remain the same at all ages. The foot length
of a 2-3 year old is 38% of overall leg length but by
adulthood it is 31%. So when young children are at
the stages of balance and gait maturation they have
a longer foot in proportion to the leg length, and
overall height, which gives them an increased base
of support.
Short heel and toe levers can have an adverse effect
on the quality of gait. The reduction of heel lever
affects first rocker and the reduction of toe lever
affects third rocker, in particular the ability of the
ground reaction force to align itself anterior to the
knee to create knee extending moments. Short heel
and toe levers are not only the resultant of a short
anatomical foot, they are also created when an
anatomically correct length foot has an excessive
externally or internally rotated ‘foot progression
angle’. Many children have a combination of a short
foot and abnormal foot progression angles
compromising their length of toe lever. When
normalising gait in AFOFCs an essential task is to
normalise segment lengths, which includes
normalising the length of the overall ‘effective leg’,
equalising leg lengths and normalising the ‘effective
heel and toe levers’ of the foot. In some
circumstances it may be helpful to increase heel and
toe levers beyond those of normative data to create
additional stability. Optimising heel and toe lever
lengths in AFOFCs is part of the tuning process
when tuning for standing, stepping and whole gait
cycle. To do this the optimum stiffness and profile
of the heel and sole of the footwear should be
determined (Owen, 2004; Owen, 2008; Owen, 2010).
using a fixed ankle AFOFC or one with a
plantarflexion stop function, the desired SVA is set
by adjusting the ‘pitch’ or more specifically the ‘heel
sole differential’ (HSD) of the footwear and any
accompanying internal wedges (Figure 1) (Cook and
Cozzens, 1976; Owen, 2004; Owen, 2010). The HSD
describes the difference in height between the heel
and sole of the footwear. Heel height alone does not
describe pitch.
Heel Sole Differential
The measured difference between the depth of the
heel at mid-heel and the depth of the sole at the
metatarsal heads. The term ‘Final heel sole
differential’ can be used to describe the overall HSD
when it includes the HSD of the footwear and HSD
of any internal wedges. The HSD is generally
measured in centimetres in clinical practice.
Degrees of pitch may be used in research or when
explaining the linkage between AA-AFO and SVA
alignments.
Adjusting the HSD of the footwear to adjust the SVA
is a key element in static and dynamic alignment
and tuning AFOFCs. Optimising the SVA is
essential to optimise standing balance, swaying, and
stepping and ‘temporal mid-stance’ of the gait cycle
(Owen, 2010).
Heel and Sole Designs – Stiffness and Profile
The design of heels and soles of footwear also
affects standing balance, swaying, stepping and the
three rehabilitative subdivisions of the gait cycle,
‘entrance to midstance’, ‘temporal midstance’ and
‘exit from temporal midstance’ (Figures 4 & 5)
(Owen, 2004; Owen, 2005; Owen, 2010). Stepping is
different to walking with full gait cycles. Stepping
has a ‘temporal midstance’, as does a full gait cycle
but it has an abbreviated ‘entrance’ and ‘exit’. The
first 10% of stance and the last 10% of single stance
are not present. Young children start walking with
abbreviated gait cycles and then develop full gait
cycles and, as we get older, we often regress to
‘stepping’.
Principal Footwear Designs – Pitch, Stiffness
and Profiles
Pitch or heel sole differential
This paper concentrates on the sagittal plane
designs of AFOFCs and has previously
distinguished, defined and discussed two of the
principal sagittal alignments in any AFOFC, the AAAFO and the SVA-AFOFC. The optimal AA-AFO
for each leg is determined by a clinical algorithm
and then the optimal SVA is determined by trials of
the activity for which the AFOFC is required. When
Figure 5 - Temporal midstance 30% gait cycle (Owen,
2010)
STIFFNESS refers to the ability of the material and
design to resist bending.
PROFILE is the shape of the sagittal view of the
distal surface of the footwear.
Both the stiffness and profile of heels and soles of
footwear can be designed and optimised for the
required activity (Figure 6) (Owen, 2004; Owen,
2005; Owen, 2010). The optimised sole design may
be flexible or stiff. If it is stiff it should have a rocker
sole profile. Whether the optimum design is a
rounded rocker or point-loading rocker the
optimum position of the rocker for the desired
activity needs to be determined. The position of the
rocker dictates the length of the ‘toe lever’ and an
optimum toe lever is required for standing, stepping
and in full gait cycles for both ‘temporal midstance’
and the ‘exit from temporal midstance’. If a patient
has a short foot it may be necessary to optimise foot
proportion by use of a stiff rocker sole to create a
false longer toe lever. Optimising heel design has
effects on the ‘heel lever’ for the ‘entrance to
midstance’.
Figure 4 - Producing normal foot, shank and thigh
kinematics with an AFOFC (Owen, 2004; Owen, 2010)
13
inclined position, and vice versa, and translate a
vertical trunk. It is not possible to achieve this with
the other 2 SVA alignments. With a vertical SVA the
thigh cannot incline without knee hyperextension
and with SVA 20° incline the thigh cannot become
inclined as this would bring the centre of mass
outside the base of support. Of course it would be
possible to incline a thigh if the base of support
were longer, so manipulating the length of a foot, or
‘effective foot’, can be helpful in rehabilitation. In
both standing and walking, moving the thigh to an
inclined position while maintaining an inclined
shank and vertical trunk creates hip and knee
extension and stabilising hip and knee external
extending moments. In standing, stepping and
walking demonstrated by an able bodied person a
10-12° inclined shank is the optimal SVA to achieve
this, for a number of reasons (Owen, 2010).
However, when optimising SVA alignments of
AFOFCs, an SVA of more than 12° incline may be
needed if the patient hyper-extends the knees or if
they have excessive stiffness at the hip and knee
joints. In the latter case this is because a more
inclined position of the SVA enables the thigh to
become vertical or inclined. All SVA alignments,
and especially those that are more inclined than 12°,
need to be coupled with the optimum length of toe
lever to have a positive effect.
SVA Guidelines
There is limited research that provides guidelines
for optimal SVA alignments for children and adults
(Appendix 1). Early guidelines were justified by a
theoretical perspective or observational gait analysis
rather than from actual kinematic and kinetic
tuning, and usually just one SVA alignment was
suggested. Only recently is there an emerging
evidence for optimal SVA alignments obtained from
gait laboratories. There is also an increasing
understanding that the SVA needs to be determined
for each leg of each patient as it will be dependant
on the clinical condition and the type of gait
pathology, and that the optimum footwear designs
are also required (Owen, 2004; Owen et al, 2004;
Meadows et al, 2008; Bowers and Ross, 2009;
Ridgwell et al, 2010; Eddison and Chockalingam,
2013).
Principal Proportions
Homo sapiens evolved from early hominids who
were the first non feathered bi-pedals. Early
hominids had long trunks, short legs, walked with a
flexed gait, had an unstable mid-foot and no valgus
alignment at the knees. All these elements meant
that walking on two limbs required a lot of energy.
Homo sapiens evolved a more efficient gait, which
12
enabled walking over longer distances and carrying
of objects. We evolved longer legs and shorter
trunks, a gait that has extension at both knees and
hips or ‘strider gait’, a stable mid-foot, a toe lever
and valgus at the knees.
The proportion of the segments of the lower limb
and the trunk dictate the kinematics and kinetics of
normal human gait. The lengths of all the body
segments at all ages are documented (Tilley, 2002).
It is interesting to note that the segment proportions
do not remain the same at all ages. The foot length
of a 2-3 year old is 38% of overall leg length but by
adulthood it is 31%. So when young children are at
the stages of balance and gait maturation they have
a longer foot in proportion to the leg length, and
overall height, which gives them an increased base
of support.
Short heel and toe levers can have an adverse effect
on the quality of gait. The reduction of heel lever
affects first rocker and the reduction of toe lever
affects third rocker, in particular the ability of the
ground reaction force to align itself anterior to the
knee to create knee extending moments. Short heel
and toe levers are not only the resultant of a short
anatomical foot, they are also created when an
anatomically correct length foot has an excessive
externally or internally rotated ‘foot progression
angle’. Many children have a combination of a short
foot and abnormal foot progression angles
compromising their length of toe lever. When
normalising gait in AFOFCs an essential task is to
normalise segment lengths, which includes
normalising the length of the overall ‘effective leg’,
equalising leg lengths and normalising the ‘effective
heel and toe levers’ of the foot. In some
circumstances it may be helpful to increase heel and
toe levers beyond those of normative data to create
additional stability. Optimising heel and toe lever
lengths in AFOFCs is part of the tuning process
when tuning for standing, stepping and whole gait
cycle. To do this the optimum stiffness and profile
of the heel and sole of the footwear should be
determined (Owen, 2004; Owen, 2008; Owen, 2010).
using a fixed ankle AFOFC or one with a
plantarflexion stop function, the desired SVA is set
by adjusting the ‘pitch’ or more specifically the ‘heel
sole differential’ (HSD) of the footwear and any
accompanying internal wedges (Figure 1) (Cook and
Cozzens, 1976; Owen, 2004; Owen, 2010). The HSD
describes the difference in height between the heel
and sole of the footwear. Heel height alone does not
describe pitch.
Heel Sole Differential
The measured difference between the depth of the
heel at mid-heel and the depth of the sole at the
metatarsal heads. The term ‘Final heel sole
differential’ can be used to describe the overall HSD
when it includes the HSD of the footwear and HSD
of any internal wedges. The HSD is generally
measured in centimetres in clinical practice.
Degrees of pitch may be used in research or when
explaining the linkage between AA-AFO and SVA
alignments.
Adjusting the HSD of the footwear to adjust the SVA
is a key element in static and dynamic alignment
and tuning AFOFCs. Optimising the SVA is
essential to optimise standing balance, swaying, and
stepping and ‘temporal mid-stance’ of the gait cycle
(Owen, 2010).
Heel and Sole Designs – Stiffness and Profile
The design of heels and soles of footwear also
affects standing balance, swaying, stepping and the
three rehabilitative subdivisions of the gait cycle,
‘entrance to midstance’, ‘temporal midstance’ and
‘exit from temporal midstance’ (Figures 4 & 5)
(Owen, 2004; Owen, 2005; Owen, 2010). Stepping is
different to walking with full gait cycles. Stepping
has a ‘temporal midstance’, as does a full gait cycle
but it has an abbreviated ‘entrance’ and ‘exit’. The
first 10% of stance and the last 10% of single stance
are not present. Young children start walking with
abbreviated gait cycles and then develop full gait
cycles and, as we get older, we often regress to
‘stepping’.
Principal Footwear Designs – Pitch, Stiffness
and Profiles
Pitch or heel sole differential
This paper concentrates on the sagittal plane
designs of AFOFCs and has previously
distinguished, defined and discussed two of the
principal sagittal alignments in any AFOFC, the AAAFO and the SVA-AFOFC. The optimal AA-AFO
for each leg is determined by a clinical algorithm
and then the optimal SVA is determined by trials of
the activity for which the AFOFC is required. When
Figure 5 - Temporal midstance 30% gait cycle (Owen,
2010)
STIFFNESS refers to the ability of the material and
design to resist bending.
PROFILE is the shape of the sagittal view of the
distal surface of the footwear.
Both the stiffness and profile of heels and soles of
footwear can be designed and optimised for the
required activity (Figure 6) (Owen, 2004; Owen,
2005; Owen, 2010). The optimised sole design may
be flexible or stiff. If it is stiff it should have a rocker
sole profile. Whether the optimum design is a
rounded rocker or point-loading rocker the
optimum position of the rocker for the desired
activity needs to be determined. The position of the
rocker dictates the length of the ‘toe lever’ and an
optimum toe lever is required for standing, stepping
and in full gait cycles for both ‘temporal midstance’
and the ‘exit from temporal midstance’. If a patient
has a short foot it may be necessary to optimise foot
proportion by use of a stiff rocker sole to create a
false longer toe lever. Optimising heel design has
effects on the ‘heel lever’ for the ‘entrance to
midstance’.
Figure 4 - Producing normal foot, shank and thigh
kinematics with an AFOFC (Owen, 2004; Owen, 2010)
13
Figure 6 - Heel and sole designs for standing, stepping
and ‘entrances to’ and ‘exits from’ temporal midstance
(Owen, 2004; Owen, 2005; Owen, 2010)
An algorithm to determine whether an AFOFC with
a dorsiflexion free function is likely to be the
optimal prescription for gait can be created (Figure
8) if a few key requirements for normal barefoot gait
are considered (Owen, 2013):
• at 40% gait cycle maximum stance phase knee
extension occurs and at this time the ankle is
dorsiflexed 10-12° (Figure 7) - there must be
sufficient gastrocnemius length available to allow
both these kinematics;
• the ankle dorsiflexes to 10-12° during mid-stance
- there must be sufficient length and sufficiently
low tone in soleus and gastrocnemius to allow
this movement;
• the ankle is prevented from excessively
dorsiflexing in mid-stance and is maintained in a
quasi-stiff position of dorsiflexion in terminal
stance by the actions of the calf muscles - there
must be sufficient strength of the calf muscles to
achieve this;
• ankle dorsiflexion in gait is coupled with stable
bony alignment of the foot.
An Algorithm for Determining Whether a
Dorsiflexion Free AFOFC is Appropriate
Like the decision about the optimal AA-AFO
alignment in a fixed ankle AFO, the decision as to
whether it is appropriate to use an dorsiflexion free
function in an AFO design is based on calf MTU
length and stiffness and triplanar bony alignment of
the foot, and an additional consideration is also
required, which is the strength of the calf MTU. An
AFOFC with a dorsiflexion free function, often
combined with a 90° plantarflexion stop function,
has been a commonly investigated orthosis. The
research to date has a number of problems,
particularly when related to gait (Owen, 2013;
Bowers and Ross, 2009):
• research often seeks to determine whether a fixed
ankle or hinged/dorsiflexion free AFO design is
optimum for diagnostic groups or categories,
which is inappropriate;
• dorsiflexion free AFOs have been investigated
with study subjects who have contraindications
to their use;
• AFOFCs with dorsiflexion free functions have
been coupled with fixed metatarsal phalangeal
joints (MTPJs) which may adversely affect ankle
joint kinematics;
• some literature states that movement at the ankle
joint is essential for gait which is incorrect (Owen,
2013).
14
* An AFOFC with an MTPJ free design is required to allow MTPJ extension during third rocker for two
reasons. Firstly, restriction in MTPJ extension may produce excessive ankle dorsiflexion. This compensatory
response is required to enable normal shank kinematics if MTPJs are fixed and not compensated for by a
rocker sole profile. Secondly, patients who meet the criteria for a dorsiflexion free AFO should also meet the
criteria for an MTPJ free design AFOFC. If they do not then a rocker sole profile is required on the footwear.
** To obtain 10-12° of ankle joint dorsiflexion in gait the dorsiflexion free AFO needs to be combined with
footwear that has a 0mm Heel Sole Differential (HSD) or 0 degree pitch. For each degree of pitch in the
footwear there will be a reduction of one degree of ankle dorsiflexion. This is because gait requires normal
shank kinematics and ankle joint kinematics adjust to the pitch of the footwear to achieve this. In normal gait
the shank is 10-12° inclined by the end of MST and a 10-12° pitch in the footwear negates the need for ankle
joint movement to achieve this.
Figure 8 - Proposed algorithm for determining whether a dorsiflexion free AFO is an appropriate prescription (Owen 2013)
Figure 7 - 40% gait cycle - maximum knee extension, ankle
dorsiflexion, maximum gastrocnemius length (Owen, 2005;
Owen, 2010)
15
Figure 6 - Heel and sole designs for standing, stepping
and ‘entrances to’ and ‘exits from’ temporal midstance
(Owen, 2004; Owen, 2005; Owen, 2010)
An algorithm to determine whether an AFOFC with
a dorsiflexion free function is likely to be the
optimal prescription for gait can be created (Figure
8) if a few key requirements for normal barefoot gait
are considered (Owen, 2013):
• at 40% gait cycle maximum stance phase knee
extension occurs and at this time the ankle is
dorsiflexed 10-12° (Figure 7) - there must be
sufficient gastrocnemius length available to allow
both these kinematics;
• the ankle dorsiflexes to 10-12° during mid-stance
- there must be sufficient length and sufficiently
low tone in soleus and gastrocnemius to allow
this movement;
• the ankle is prevented from excessively
dorsiflexing in mid-stance and is maintained in a
quasi-stiff position of dorsiflexion in terminal
stance by the actions of the calf muscles - there
must be sufficient strength of the calf muscles to
achieve this;
• ankle dorsiflexion in gait is coupled with stable
bony alignment of the foot.
An Algorithm for Determining Whether a
Dorsiflexion Free AFOFC is Appropriate
Like the decision about the optimal AA-AFO
alignment in a fixed ankle AFO, the decision as to
whether it is appropriate to use an dorsiflexion free
function in an AFO design is based on calf MTU
length and stiffness and triplanar bony alignment of
the foot, and an additional consideration is also
required, which is the strength of the calf MTU. An
AFOFC with a dorsiflexion free function, often
combined with a 90° plantarflexion stop function,
has been a commonly investigated orthosis. The
research to date has a number of problems,
particularly when related to gait (Owen, 2013;
Bowers and Ross, 2009):
• research often seeks to determine whether a fixed
ankle or hinged/dorsiflexion free AFO design is
optimum for diagnostic groups or categories,
which is inappropriate;
• dorsiflexion free AFOs have been investigated
with study subjects who have contraindications
to their use;
• AFOFCs with dorsiflexion free functions have
been coupled with fixed metatarsal phalangeal
joints (MTPJs) which may adversely affect ankle
joint kinematics;
• some literature states that movement at the ankle
joint is essential for gait which is incorrect (Owen,
2013).
14
* An AFOFC with an MTPJ free design is required to allow MTPJ extension during third rocker for two
reasons. Firstly, restriction in MTPJ extension may produce excessive ankle dorsiflexion. This compensatory
response is required to enable normal shank kinematics if MTPJs are fixed and not compensated for by a
rocker sole profile. Secondly, patients who meet the criteria for a dorsiflexion free AFO should also meet the
criteria for an MTPJ free design AFOFC. If they do not then a rocker sole profile is required on the footwear.
** To obtain 10-12° of ankle joint dorsiflexion in gait the dorsiflexion free AFO needs to be combined with
footwear that has a 0mm Heel Sole Differential (HSD) or 0 degree pitch. For each degree of pitch in the
footwear there will be a reduction of one degree of ankle dorsiflexion. This is because gait requires normal
shank kinematics and ankle joint kinematics adjust to the pitch of the footwear to achieve this. In normal gait
the shank is 10-12° inclined by the end of MST and a 10-12° pitch in the footwear negates the need for ankle
joint movement to achieve this.
Figure 8 - Proposed algorithm for determining whether a dorsiflexion free AFO is an appropriate prescription (Owen 2013)
Figure 7 - 40% gait cycle - maximum knee extension, ankle
dorsiflexion, maximum gastrocnemius length (Owen, 2005;
Owen, 2010)
15
Conclusion
Research about biomechanical optimisation of
AFOFCs is still at any early stage of development
(Owen, 2004; Owen, 2010; Meadows et al, 2008;
Bowers and Ross, 2009; Ridgewell, 2010, Eddison
and Chockalingam, 2013). One of the problems
with the emerging evidence is that only the SVA
seems to have been manipulated in some trials with
lack of detail about the AA-AFO and whether it was
optimised prior to tuning trials. The designs at the
metatarsal phalangeal joints and the heels and soles
of the footwear are also not stated as being
optimised. The pre-requisites for determining the
optimal SVA alignment for each leg of each patient
are that all the other design features of the AFOFC
are optimal, which includes optimisation of AAAFO, designs of the AFO, heel and toe levers,
design of the footwear heel and sole stiffness and
profile and having leg lengths equalised in
prescriptions (Owen, 2010). The process of
optimising prescriptions is therefore multi-faceted.
In future research it would preferable if AFOFC
prescriptions were optimised in all parameters and
then just one parameter varied, rather than vary one
parameter while other parameters may not be
optimum. A recent editorial (Fatone, 2010) has
suggested that there are many challenges in lower
limb orthotic research because of the heterogeneity
of: the mechanics of the device; the individual and
each leg of the individual; the interaction of the
device with the individual; and the required
outcomes for the individual. She comments that
customisation produces confounding variables,
standardisation limits the population for the study
and single subject research and case studies are
perhaps the most readily understood by
practitioners and transferred into clinical practice.
Eddison N, Chockalingam N (2013). (Review) The effect
of tuning ankle foot orthoses-footwear combination on the
gait parameters of children with cerebral palsy. Prosthetics
and Orthotics International 37(2):95-107.
Fatone S (2010). Challenges in lower limb orthotic
research. Prosthet Orthot Int 34(3) : 235-237.
Fulford GE, Cairns TP (1978). The problems associated
with flail feet in children and their treatment with
orthoses. J Bone Joint Surgery 60-B: 93-95.
Glancy J, Lindseth RE (1972). The polypropylene solidankle orthosis. Orthot Prosthet 26(1): 14-26.
Hullin MG, Robb JE, and Loudon IR (1992). Ankle-foot
orthosis function in low-level myelomeningocele. J
Pediatr Orthop 12: 518-521.
International Organisation for Standardisation. ISO 85491:1989 Prosthetics and orthotics –Vocabulary . Part 1 General terms for external limb prostheses and orthoses.
Geneva: International Organisation for Standardisation,
1989.
International Organisation for Standardisation. ISO 85493:1989 Prosthetics and orthotics –Vocabulary . Part 3 Terms relating to external orthoses. Geneva: International
Organisation for Standardisation, 1989.
International Organisation for Standardisation. ISO 8551
Prosthetics and orthotics –Functional DeficienciesDescription of the person to be treated with an orthosis,
clinical objectives of treatment and functional
requirements of the orthosis Geneva: International
2007 Prosthetics and orthotics –Categorization and
description of external orthoses and orthotic components.
2007.
Lieber RL (2010). Skeletal Muscle Structure, Function and
Plasticity.The physiological basis of rehabilitation. 3rd
Edition. Lippincott Williams & Wilkins.
Majnemer A (Ed) (2012). Measures for Children with
Developmental Disabilities. An ICF-CY approach. Clinics
in Developmental Medicine No. 194-195 Mc Keith Press
ISBN 978-1-908316-45-5.
Meadows CB (1984). The influence of polypropylene
ankle-foot orthoses on the gait of cerebral palsied
children. PhD Thesis - Glasgow: University of Strathclyde.
Meadows CB, Bowers R, Owen E (2008). Chapter 22
Biomechanics of Hip Knee and Ankle in: Hsu JD, Michael
JW, Fisk JR. (Eds) American Academy of Orthopaedic
Surgeons Atlas of Orthoses and Assistive Devices.
Elsevier ISBN 978-0-323-03931-4.
Morris C and Condie D (Eds) (2009). (Review) Recent
Developments in healthcare for children with cerebral
palsy: implications and opportunities for orthotics.
International Society for Prosthetics and Orthotics,
Consensus Conference. ISBN 87-89809-28-9 Free
download from ispoint.org.
Nuzzo RM (1980). Dynamic bracing: elastics for patients
with cerebral palsy, muscular dystrophy and
myelodysplasia. Clin Orthop 148: 263-273.
Nuzzo RM (1983). High-performance activity with belowknee cast treatment. Part 1: Mechanics and demonstration
Orthopedics 6: 713-723.
Nuzzo RM (1983). High-performance activity with belowknee cast treatment. Part 2: Clinical Application and the
weak link hypothesis. Orthopedics 6: 817-830.
Nuzzo RM (1986). A simple treatment of genu recurvatum
in ataxic and athetoid cerebral palsy. Orthopedics 9: 123127.
International Classification of Functioning Disability and
Health: children and youth version: ICF-CY. (2007) World
Health Organisation. ISBN 978 92 4 1547321.
Owen E. (2002). Shank angle to floor measures of tuned
‘ankle-foot orthosis footwear combinations’ used with
children with cerebral palsy, spina bifida and other
conditions. Gait & Posture 16: Supp 1, S132-S133.
Bowers R and Ross K, (2009). (Review) A review of the
effectiveness of lower limb orthoses in cerebral palsy; In
Morris C and Condie D (Eds) (2009) Recent Developments
in healthcare for children with cerebral palsy: implications
and opportunities for orthotics. International Society for
Prosthetics and Orthotics, Consensus Conference. ISBN
87-89809-28-9. Free download from ispoint.org.
Jagadamma K, Coutts F, Mercer TH, Herman J, Yirrell J,
Forbes FJ, Van der Linden ML (2009). Effects of tuning of
Ankle-Foot Orthoses- Footwear Combination using
wedges on stance phase knee hyperextension in children
with cerebral palsy- Preliminary results. Disabil Rehabil
Assist Technol 4(6) : 406-413.
Owen E. (2004). (Contains Review) ‘Shank angle to floor
measures’ and tuning of ‘Ankle-foot orthosis footwear
combinations’ for children with cerebral palsy, spina
bifida and other conditions. MSc Thesis. Glasgow:
University of Strathclyde. Also available from:
lugger@talk21.com.
Cook TM, Cozzens B (1976). The effects of heel height and
ankle-foot-orthoses configuration on weight line location:
a demonstration of principles. Arch Phys Med Rehabil 30:
43-49.
Jagadamma K, Owen E, Coutts F, Herman J, Yirrell J, Van
der Linden M (2010). The effects of tuning an ankle-foot
orthosis footwear combination on kinematics and kinetics
of the knee joint of an adult with hemiplegia. Prosthet
Orthot Int 34(3):270-276.
Owen E (2004). The point of ‘point-loading rockers’ in
ankle-foot orthosis footwear combinations used with
conditions. Gait & Posture 20S, S86.
References
Cusick BD (1990). Progressive casting and splinting for
lower extremity deformities in children with neuromotor
dysfunction. Tucson, Arizona: Therapy Skill Builders.
16
Jebsen RH, Corcoran PJ, Simons BC (1970). Clinical
experience with a plastic short leg brace. Arch Phys Med
Rehabil 51: 114-119.
Owen E, Bowers R, Meadows CB (2004). Tuning of AFOFootwear Combinations for Neurological Disorders In:
Conference Proceedings. International Society for
Prosthetics and Orthotics (ISPO) 11th World Congress,
Hong Kong: ISPO: 278-279.
Owen E (2005). A clinical algorithm for the design and
tuning of ankle-foot orthosis footwear combinations
(AFOFCs) based on shank kinematics. Gait & Posture 22S:
S36-S37.
Owen E (2005). Proposed clinical algorithm for deciding
the sagittal angle of the ankle in an ankle-foot orthosis
footwear combination. Gait & Posture 22S: S38-S39.
conditions. In: Conference Proceedings. International
Society for Prosthetics and Orthotics (ISPO) 12th World
Congress, Vancouver: ISPO: 497.
Owen E (2010). (Review) The importance of being earnest
about shank and thigh kinematics especially when using
ankle-foot orthoses. Prosthet Orthot Int 34(3): 254-269.
Owen E (2013). A proposed clinical algorithm for
dorsiflexion free AFOFCs based on calf muscle length,
strength, stiffness and skeletal alignment. Abstracts ISPO
UK MS Annual Scientific Meeting. Awarded BLESMA
Best Free Paper Prize.
Reimers J, Pedersen B, Broderson A (1995). Foot
deformity and the length of the triceps surae in Danish
children Between 3 and 17 years old. J Pediatr Orthop
Part B 4: 71-73.
Ridgewell E, Dobson F, Bach T, Baker R (2010). (Review).
A systematic review to determine best practice reporting
guidelines for AFO interventions in studies involving
children with cerebral palsy. Prosthet and Orthot Int 34(2):
129-145.
Rosenthal RK, Deutsch SD, Miller W, Schumann W, and
Hall JE (1975). A fixed-ankle, below-the-knee orthosis for
the management of genu recurvatum in spastic cerebral
palsy. J Bone Joint Surg Am 57: 545-547.
Sanger TD, Delgado MR, Gaebler-Spira D,Hallett M, Mink
JW (2003). Classification and definition of disorders
causing hypertonia in childhood. Pediatrics 111:e89-97.
Simon SR, Deutsch SD, Nuzzo RM, Mansour MJ, Jackson
JL, Koskinen M, Rosenthal RK (1978). Genu recurvatum in
spastic cerebral palsy. J Bone Joint Surg 60-A: 882-894.
Tilley AR (2002). The measure of man and woman.
Revised edition. John Wiley & Son. New York.
Owen E (2004). Tuning of ankle-foot orthosis
combinations for children with cerebral palsy, spina bifida
and other conditions. Proceedings of ESMAC Seminars.
Warsaw, European Society for Movement Analysis of
Children and Adults. Available from: lugger@talk21.com.
17
Conclusion
Research about biomechanical optimisation of
AFOFCs is still at any early stage of development
(Owen, 2004; Owen, 2010; Meadows et al, 2008;
Bowers and Ross, 2009; Ridgewell, 2010, Eddison
and Chockalingam, 2013). One of the problems
with the emerging evidence is that only the SVA
seems to have been manipulated in some trials with
lack of detail about the AA-AFO and whether it was
optimised prior to tuning trials. The designs at the
metatarsal phalangeal joints and the heels and soles
of the footwear are also not stated as being
optimised. The pre-requisites for determining the
optimal SVA alignment for each leg of each patient
are that all the other design features of the AFOFC
are optimal, which includes optimisation of AAAFO, designs of the AFO, heel and toe levers,
design of the footwear heel and sole stiffness and
profile and having leg lengths equalised in
prescriptions (Owen, 2010). The process of
optimising prescriptions is therefore multi-faceted.
In future research it would preferable if AFOFC
prescriptions were optimised in all parameters and
then just one parameter varied, rather than vary one
parameter while other parameters may not be
optimum. A recent editorial (Fatone, 2010) has
suggested that there are many challenges in lower
limb orthotic research because of the heterogeneity
of: the mechanics of the device; the individual and
each leg of the individual; the interaction of the
device with the individual; and the required
outcomes for the individual. She comments that
customisation produces confounding variables,
standardisation limits the population for the study
and single subject research and case studies are
perhaps the most readily understood by
practitioners and transferred into clinical practice.
Eddison N, Chockalingam N (2013). (Review) The effect
of tuning ankle foot orthoses-footwear combination on the
gait parameters of children with cerebral palsy. Prosthetics
and Orthotics International 37(2):95-107.
Fatone S (2010). Challenges in lower limb orthotic
research. Prosthet Orthot Int 34(3) : 235-237.
Fulford GE, Cairns TP (1978). The problems associated
with flail feet in children and their treatment with
orthoses. J Bone Joint Surgery 60-B: 93-95.
Glancy J, Lindseth RE (1972). The polypropylene solidankle orthosis. Orthot Prosthet 26(1): 14-26.
Hullin MG, Robb JE, and Loudon IR (1992). Ankle-foot
orthosis function in low-level myelomeningocele. J
Pediatr Orthop 12: 518-521.
International Organisation for Standardisation. ISO 85491:1989 Prosthetics and orthotics –Vocabulary . Part 1 General terms for external limb prostheses and orthoses.
1989.
International Organisation for Standardisation. ISO 85493:1989 Prosthetics and orthotics –Vocabulary . Part 3 Terms relating to external orthoses. Geneva: International
Prosthetics and orthotics –Functional DeficienciesDescription of the person to be treated with an orthosis,
clinical objectives of treatment and functional
requirements of the orthosis Geneva: International
2007 Prosthetics and orthotics –Categorization and
description of external orthoses and orthotic components.
2007.
Lieber RL (2010). Skeletal Muscle Structure, Function and
Plasticity.The physiological basis of rehabilitation. 3rd
Edition. Lippincott Williams & Wilkins.
Majnemer A (Ed) (2012). Measures for Children with
Developmental Disabilities. An ICF-CY approach. Clinics
in Developmental Medicine No. 194-195 Mc Keith Press
ISBN 978-1-908316-45-5.
Meadows CB (1984). The influence of polypropylene
ankle-foot orthoses on the gait of cerebral palsied
children. PhD Thesis - Glasgow: University of Strathclyde.
Meadows CB, Bowers R, Owen E (2008). Chapter 22
Biomechanics of Hip Knee and Ankle in: Hsu JD, Michael
JW, Fisk JR. (Eds) American Academy of Orthopaedic
Surgeons Atlas of Orthoses and Assistive Devices.
Elsevier ISBN 978-0-323-03931-4.
Morris C and Condie D (Eds) (2009). (Review) Recent
Developments in healthcare for children with cerebral
palsy: implications and opportunities for orthotics.
International Society for Prosthetics and Orthotics,
Consensus Conference. ISBN 87-89809-28-9 Free
download from ispoint.org.
Nuzzo RM (1980). Dynamic bracing: elastics for patients
with cerebral palsy, muscular dystrophy and
myelodysplasia. Clin Orthop 148: 263-273.
Nuzzo RM (1983). High-performance activity with belowknee cast treatment. Part 1: Mechanics and demonstration
Orthopedics 6: 713-723.
Nuzzo RM (1983). High-performance activity with belowknee cast treatment. Part 2: Clinical Application and the
weak link hypothesis. Orthopedics 6: 817-830.
Nuzzo RM (1986). A simple treatment of genu recurvatum
in ataxic and athetoid cerebral palsy. Orthopedics 9: 123127.
International Classification of Functioning Disability and
Health: children and youth version: ICF-CY. (2007) World
Health Organisation. ISBN 978 92 4 1547321.
Owen E. (2002). Shank angle to floor measures of tuned
‘ankle-foot orthosis footwear combinations’ used with
conditions. Gait & Posture 16: Supp 1, S132-S133.
Bowers R and Ross K, (2009). (Review) A review of the
effectiveness of lower limb orthoses in cerebral palsy; In
Morris C and Condie D (Eds) (2009) Recent Developments
in healthcare for children with cerebral palsy: implications
and opportunities for orthotics. International Society for
Prosthetics and Orthotics, Consensus Conference. ISBN
87-89809-28-9. Free download from ispoint.org.
Jagadamma K, Coutts F, Mercer TH, Herman J, Yirrell J,
Forbes FJ, Van der Linden ML (2009). Effects of tuning of
Ankle-Foot Orthoses- Footwear Combination using
wedges on stance phase knee hyperextension in children
with cerebral palsy- Preliminary results. Disabil Rehabil
Assist Technol 4(6) : 406-413.
Owen E. (2004). (Contains Review) ‘Shank angle to floor
measures’ and tuning of ‘Ankle-foot orthosis footwear
combinations’ for children with cerebral palsy, spina
bifida and other conditions. MSc Thesis. Glasgow:
University of Strathclyde. Also available from:
lugger@talk21.com.
Cook TM, Cozzens B (1976). The effects of heel height and
ankle-foot-orthoses configuration on weight line location:
a demonstration of principles. Arch Phys Med Rehabil 30:
43-49.
Jagadamma K, Owen E, Coutts F, Herman J, Yirrell J, Van
der Linden M (2010). The effects of tuning an ankle-foot
orthosis footwear combination on kinematics and kinetics
of the knee joint of an adult with hemiplegia. Prosthet
Orthot Int 34(3):270-276.
conditions. Gait & Posture 20S, S86.
References
Cusick BD (1990). Progressive casting and splinting for
lower extremity deformities in children with neuromotor
dysfunction. Tucson, Arizona: Therapy Skill Builders.
16
Jebsen RH, Corcoran PJ, Simons BC (1970). Clinical
experience with a plastic short leg brace. Arch Phys Med
Rehabil 51: 114-119.
Owen E, Bowers R, Meadows CB (2004). Tuning of AFOFootwear Combinations for Neurological Disorders In:
Conference Proceedings. International Society for
Prosthetics and Orthotics (ISPO) 11th World Congress,
Hong Kong: ISPO: 278-279.
Owen E (2005). A clinical algorithm for the design and
tuning of ankle-foot orthosis footwear combinations
(AFOFCs) based on shank kinematics. Gait & Posture 22S:
S36-S37.
Owen E (2005). Proposed clinical algorithm for deciding
the sagittal angle of the ankle in an ankle-foot orthosis
footwear combination. Gait & Posture 22S: S38-S39.
conditions. In: Conference Proceedings. International
Society for Prosthetics and Orthotics (ISPO) 12th World
Congress, Vancouver: ISPO: 497.
Owen E (2010). (Review) The importance of being earnest
about shank and thigh kinematics especially when using
ankle-foot orthoses. Prosthet Orthot Int 34(3): 254-269.
Owen E (2013). A proposed clinical algorithm for
dorsiflexion free AFOFCs based on calf muscle length,
strength, stiffness and skeletal alignment. Abstracts ISPO
UK MS Annual Scientific Meeting. Awarded BLESMA
Best Free Paper Prize.
Reimers J, Pedersen B, Broderson A (1995). Foot
deformity and the length of the triceps surae in Danish
children Between 3 and 17 years old. J Pediatr Orthop
Part B 4: 71-73.
Ridgewell E, Dobson F, Bach T, Baker R (2010). (Review).
A systematic review to determine best practice reporting
guidelines for AFO interventions in studies involving
children with cerebral palsy. Prosthet and Orthot Int 34(2):
129-145.
Rosenthal RK, Deutsch SD, Miller W, Schumann W, and
Hall JE (1975). A fixed-ankle, below-the-knee orthosis for
the management of genu recurvatum in spastic cerebral
palsy. J Bone Joint Surg Am 57: 545-547.
Sanger TD, Delgado MR, Gaebler-Spira D,Hallett M, Mink
JW (2003). Classification and definition of disorders
causing hypertonia in childhood. Pediatrics 111:e89-97.
Simon SR, Deutsch SD, Nuzzo RM, Mansour MJ, Jackson
JL, Koskinen M, Rosenthal RK (1978). Genu recurvatum in
spastic cerebral palsy. J Bone Joint Surg 60-A: 882-894.
Tilley AR (2002). The measure of man and woman.
Revised edition. John Wiley & Son. New York.
Owen E (2004). Tuning of ankle-foot orthosis
combinations for children with cerebral palsy, spina bifida
and other conditions. Proceedings of ESMAC Seminars.
Warsaw, European Society for Movement Analysis of
Children and Adults. Available from: lugger@talk21.com.
17
The Learning Experiences of Parents with Children Requiring Physiotherapy
Intervention
Appendix 1
Publications detailing a recommended or optimised SVA for fixed ankle AFOFCs.
Deborah Wilson BSc (HONS) MSc MCSP
Children included in all except one (*). Adapted from Owen E (2004) MSc Thesis
YEAR
AUTHOR
SVA
COMMENT
1970
Jebsen, Corcoran, Simon
10° Incline
•
Theoretical justification
1972
Glancy & Lindseth
3-5° Incline
•
Visual gait analysis
1978
Fulford & Cairns
Slight Incline
•
1978
Simon et al
10-15° Incline
•
SVA deducible from other data given in
Rosenthal et al 1975
SVAs optimised on an inclined walkway
Kinematic and kinetic gait analysis
•
•
1983
Nuzzo
Knee cap over MTPJs
•
Theoretical justification from kinematic gait
analysis
1984
Meadows
4-17° Incline
•
•
SVAs deducible from other data given
SVAs are best of selected SVA trails and
may not be fully optimised
•
1986
Nuzzo
7-10° Incline
•
Theoretical justification and kinematic gait
analysis
1990
Cusick
5° Incline
•
1992
Hullin, Robb, Loudon
0° with a rocker sole
or 10° incline without
a rocker sole
•
•
•
SVAs deducible
Two conditions trialled, SVA 0° with rocker
sole and SVA 10° Incline with no rocker sole
Kinematic and kinetic gait analysis.
2002
Owen E
7-15° Incline
Mean 11.4° Inc
•
•
SVAs tuned to optimum
2009
Jagadamma et al
10.8° Inc
(SD 1.8)
•
•
SVAs are best of selected SVA trails and may
not be fully optimised
•
•
•
SVA and sole design tuned to optimum
Single case study, adult with CVA
2010
18
Jagadamma et al *
14° Inc
Western Sussex Hospitals NHS Foundation Trust
Author’s email: Deborah.wilson2@wsht.nhs.uk
_______________________________________________________________________________
ABSTRACT
Background and purpose
Parents of children with complex physical disabilities are expected to be active partners in delivering Home
Exercise Programmes (HEPs). Their role involves them acquiring a range of techniques for administering
exercise, facilitating therapeutic activities, donning and doffing orthotics and using multiple pieces of
equipment that potentially change over time as their child grows. Little is known about the needs and
experiences of parents who are responsible for carrying out HEPs for their child with long term
physiotherapy needs.
Methods
Six parents responsible for a physiotherapy HEP for their child were selected through convenience sampling.
Experiences of learning from paediatric physiotherapists were explored through unstructured interviews
applying Colaizzi’s framework to interpret audio recorded and transcribed data.
Results
Three major themes emerged:
i) the relevance of roles and responsibilities;
ii) the relevance of learning physiotherapy, its meaning and context;
iii) doing physiotherapy - enabling and influencing, practicalities, barriers, and tangible things.
Conclusions
The implications of the phenomena are discussed. In light of the results, questions regarding the delivery of
care in today’s NHS, recommendations and implications for current practice are raised.
_________________________________________________________________________________________________
For children who have physical disabilities,
physiotherapy is often one of the first therapeutic
treatments that parents encounter, and usually
continues throughout the child’s life (Piggot et al,
2003). Physiotherapists work with the child and
their carers through therapy techniques and with
equipment (Tétreault et al, 2003; Wiart et al, 2010).
implement HEPs (Novak & Cusick, 2006).
Physiotherapists will use knowledge of the child’s
condition, motor planning and evidenced
treatments to make decisions about HEPs.
Collaboration is intricately entwined in
multifactoral personal, social and clinical
reasoning. In applying collaborative practice it is
assumed that physiotherapists are meeting family
preferences.
Since the 1980’s the shift towards family centred
care (FCC), and increased parent participation has
been driven by the evolution of health care.
Collaborative community based intervention
focuses on parents as partners (Wiart et al, 2010;
Hinojosa et al, 2002). Physiotherapists in today’s
health service integrate HEPs at home, nursery and
school. Parents are asked to consent to
physiotherapy involvement and expected to
FCC requires excellent communication and
teaching skills. The physiotherapist needs to
appreciate family systems, cultural differences and
wider socio-economic factors and the abilities of
the parents (Case-Smith & Nastro, 1993). The
belief is that families are better placed to carry out
HEPs in the context of their life, and prioritise their
child’s health needs (Novak & Cusick, 2006). For
HEPs to be successful, however, families need to be
Introduction
19
The Learning Experiences of Parents with Children Requiring Physiotherapy
Intervention
Appendix 1
Publications detailing a recommended or optimised SVA for fixed ankle AFOFCs.
Deborah Wilson BSc (HONS) MSc MCSP
Children included in all except one (*). Adapted from Owen E (2004) MSc Thesis
YEAR
AUTHOR
SVA
COMMENT
1970
Jebsen, Corcoran, Simon
10° Incline
•
1972
Glancy & Lindseth
3-5° Incline
•
Visual gait analysis
1978
Fulford & Cairns
Slight Incline
•
1978
Simon et al
10-15° Incline
•
SVA deducible from other data given in
Rosenthal et al 1975
SVAs optimised on an inclined walkway
•
•
1983
Nuzzo
Knee cap over MTPJs
•
Theoretical justification from kinematic gait
analysis
1984
Meadows
4-17° Incline
•
•
SVAs deducible from other data given
SVAs are best of selected SVA trails and
may not be fully optimised
•
1986
Nuzzo
7-10° Incline
•
Theoretical justification and kinematic gait
analysis
1990
Cusick
5° Incline
•
1992
Hullin, Robb, Loudon
0° with a rocker sole
or 10° incline without
a rocker sole
•
•
•
SVAs deducible
Two conditions trialled, SVA 0° with rocker
sole and SVA 10° Incline with no rocker sole
Kinematic and kinetic gait analysis.
2002
Owen E
7-15° Incline
Mean 11.4° Inc
•
•
SVAs tuned to optimum
2009
Jagadamma et al
10.8° Inc
(SD 1.8)
•
•
SVAs are best of selected SVA trails and may
not be fully optimised
•
•
•
SVA and sole design tuned to optimum
Single case study, adult with CVA
2010
18
Jagadamma et al *
14° Inc
Western Sussex Hospitals NHS Foundation Trust
Author’s email: Deborah.wilson2@wsht.nhs.uk
_______________________________________________________________________________
ABSTRACT
Background and purpose
Parents of children with complex physical disabilities are expected to be active partners in delivering Home
Exercise Programmes (HEPs). Their role involves them acquiring a range of techniques for administering
exercise, facilitating therapeutic activities, donning and doffing orthotics and using multiple pieces of
equipment that potentially change over time as their child grows. Little is known about the needs and
experiences of parents who are responsible for carrying out HEPs for their child with long term
physiotherapy needs.
Methods
Six parents responsible for a physiotherapy HEP for their child were selected through convenience sampling.
Experiences of learning from paediatric physiotherapists were explored through unstructured interviews
applying Colaizzi’s framework to interpret audio recorded and transcribed data.
Results
Three major themes emerged:
i) the relevance of roles and responsibilities;
ii) the relevance of learning physiotherapy, its meaning and context;
iii) doing physiotherapy - enabling and influencing, practicalities, barriers, and tangible things.
Conclusions
The implications of the phenomena are discussed. In light of the results, questions regarding the delivery of
care in today’s NHS, recommendations and implications for current practice are raised.
_________________________________________________________________________________________________
For children who have physical disabilities,
physiotherapy is often one of the first therapeutic
treatments that parents encounter, and usually
continues throughout the child’s life (Piggot et al,
2003). Physiotherapists work with the child and
their carers through therapy techniques and with
equipment (Tétreault et al, 2003; Wiart et al, 2010).
implement HEPs (Novak & Cusick, 2006).
Physiotherapists will use knowledge of the child’s
condition, motor planning and evidenced
treatments to make decisions about HEPs.
Collaboration is intricately entwined in
multifactoral personal, social and clinical
reasoning. In applying collaborative practice it is
assumed that physiotherapists are meeting family
preferences.
Since the 1980’s the shift towards family centred
care (FCC), and increased parent participation has
been driven by the evolution of health care.
Collaborative community based intervention
focuses on parents as partners (Wiart et al, 2010;
Hinojosa et al, 2002). Physiotherapists in today’s
health service integrate HEPs at home, nursery and
school. Parents are asked to consent to
physiotherapy involvement and expected to
FCC requires excellent communication and
teaching skills. The physiotherapist needs to
appreciate family systems, cultural differences and
wider socio-economic factors and the abilities of
the parents (Case-Smith & Nastro, 1993). The
belief is that families are better placed to carry out
HEPs in the context of their life, and prioritise their
child’s health needs (Novak & Cusick, 2006). For
HEPs to be successful, however, families need to be
Introduction
19
D. Wilson / APCP Journal Volume 5 Number 1 (2014) 19-29
competent, willing, and supported and therapists
need to be skilled to work with the parent and child
to achieve this ( Harrison et al, 2007).
The physiotherapist’s role is both complex and
changeable (Seideman & Kleine, 1995). As a
facilitator of learning, physiotherapists require
expertise in:
• teaching exercise;
• demonstrating techniques of stretching;
• creating written advice sheets;
• supporting learning for varying learning styles,
competencies and social backgrounds;
• troubleshooting during difficult times;
• guiding and coaching parents in problem.
Teaching skills are not always directly taught, but
develop through experiential opportunities,
reflective practice, evidence based practice,
literature, and based on clinical reasoning (Graham
et al, 2009).
The majority of physiotherapists have no formal
teaching qualifications. It is proposed, but not yet
proven, that to be able to instruct a caregiver
(Forrest, 2004) that physiotherapists need to be able
to:
• transfer knowledge;
• improvise and modify to different learning
environments and social contexts;
• respond to different goals;
• remain dynamic at all times - to maintain
learner engagement and motivation;
• respond to the changes of time, learner
expertise, changes in relationships, goals, needs;
• show technical expertise;
• retain moral standards.
Motivation and goals relating to hopes and fears of
the parent for the child seem to underpin learning
needs (Braga et al, 2005). Theories of trust and
confidence requirements in learning facilitation can
be drawn from andrology, and feelings of success
from cognitive theory (Dobbin, 2001). Parts of
behavioural theory too can be drawn upon when
interpreting some of the task related experiences
(Hughes, 1999).
Little is known about the learning preferences of
parents (Ross & Thomson, 1993). There is little
evidence on what influences the ability to learn
techniques, but some evidence of a link between
therapeutic relationship, empathy and success
(Harrison et al, 2007; McIntosh & Runciman, 2008;
Gladwin, 2012). Table 1 shows elements of adult
learning as suggested by Forrest (2004).
20
Elements of adult learning
How they are demonstrated
Accumulation of experience Independence increases, reactions
to learning new information is
supported by values and beliefs
and community trusts were received. Ethics
approvals were received from both the University of
Brighton and NHS ethics London-Surrey Borders
committees. Parents were required to sign an
informed consent form.
framework gave a specific frame of reference to the
hermeneutic phenomenological study (Sanders,
2003). Colaizzi’s framework of reference is shown in
Table 2.
Stages of Interpretation (1-7) Reasoning
Developmental trends
Adults are receptive to learning
after major life events
Anxiety and ambivalence
There is gradual willingness to
take responsibility in own learning
Autonomy and self-direction Learning activities reflect
personal interests
Goal-orientation
Know own objectives of learning
and value clearly defined
programmes
Practicality and relevancy
orientation
There has to be a reason or value
in the application of learning
Table 1 - Adult learning theory (Forrest, 2004)
Though research demonstrates physiotherapists’
belief in the effectiveness of care provision (Hinojosa
et al, 2002), parents’ perceptions of the benefits in
delivery, are unknown (Price & Miner, 2009). There
are perceived problems with delivering HEPs, such
as: non-optimal environments; hands on therapy
being ‘watered down’; burdensome and interfering
with family life (Litchfield & MacDougall, 2002).
Without emotional resilience, combined with learner
support, there may be difficulty in motivating or
maintaining learning (Harrison et al, 2007).
The aim of this study was:
a) to explore the learning experiences of parents
whose children required physiotherapy
interventions;
b) to capture the shared experiences of parents and
formulate meanings that would be generalisable to
current physiotherapy practice.
Methodology
Design
An iterative (hermeneutic) phenomenological
qualitative study. This approach explores the
interpretation of the true meanings of lived
experiences, through narrative analysis and by use
of an analytical framework.
There is no one true result or meaning to this study,
but the results reflect logical and plausible findings
by using a framework (Lopez & Willis, 2004).
Regulatory approval and ethics
Approval and sponsorship from the research and
clinical governance department within the hospital
Participant selection
Convenience sampling was used to select parents in
southeast England. The cohorts shared similar
experiences and were available within the time
limitations and parameters of this study. A total of
six parents were interviewed including two male
and four female participants. Original recruitment
numbers were nine, but the remaining interviews
could not take place due to difficulties in agreeing
times to suit the potential participants within the
constraints of time available to complete the
research. Parents had children with a variety of long
term physical conditions of varied ages and also had
varied amounts of experience. This added to the
richness of the results.
Inclusion criteria
Parent/carer of a child or children with a long term
physical condition, currently receiving
physiotherapy in West Sussex and responsible for
applying the physiotherapy skills taught for a
minimum of six months. Data on the child was not
collected because this study was not disease specific.
The parent/carer may be of either gender and could
be long term foster or adopted parent.
Exclusion criteria
Parents/carers whose experiences of physiotherapy
have been outside of the UK and/or being less than
16 years of age.
Procedures and data analysis
Reflective notes were recorded throughout the
process, developed and integrated into emerging
concepts to add rigor to the chosen methodology.
In-depth unstructured interviews were undertaken
either in a private room at the hospital or at the
participant’s home and lasted about 60 minutes. The
interviews were audio recorded and transcribed
verbatim soon after the completion of the interview.
A Sony IC electronic Dictaphone recorder was used
with a discreet microphone, which was placed
between the participant and interviewer. Sample
open ended questions guided the interview, and
were developed for subsequent interviews
(Appendix 1).
Utilizing Colaizzi’s (1978) 7 stage method of
analysis, interpretation of the data was rigorously
and logically employed. The clarity provided by this
ensured an audit trail of decisions made adding
credibility and reliability. The orientating
1. Acquiring a sense of each
transcript
Feeling ideas in order to
understand them
2. Extracting significant
statements
To form the meaning of the
experience
3. Formulations of meanings
Reflecting on my own
assumptions and enabling
direction of thinking.
4. Organizing formulated
meanings into clusters of
themes
Giving clarity to the process
of how the themes emerged
5. Exhaustively describing the To ensure all elements of the
investigated phenomenon experience are included
6. Describing the fundamental To make meaning of the
structure of the
exhaustive and lengthy
phenomenon
descriptions
7. Returning to the
participants
Final and essential validation
to ensure the phenomenon
represents the parent’s
experiences.
Table 2 - Colaizzi’s Seven Stage Method (Sanders, 2003)
Each transcribed interview was coded. By using
theoretical sampling, emergence of ideas or lack of
complete concepts directed further interviews.
Earlier interviews were re-examined to ensure
thorough analysis. Each parent was given
opportunity to amend the transcripts. The process
allowed analytical questions to be asked and
reflection was integral. Peer and participant
debriefing and evaluation was sought to ensure
further trustworthiness of the interpretations.
Results
The essence of parents’ experiences was about roles
and relationships, the meaning and context of
learning physiotherapy and the things that
influence the learning journey, both emotional and
tangible. The third and fourth stage of Colaizzi
analysis creates emergent themes. There were 16
emergent themes. Through further stages of the
Colaizzi framework, once the phenomenon has been
exhaustively written, three clear major themes were
defined (Appendix 2).
Both positive and negative experiences were shared
and there was diversity in experience as the parents
involved were both at the early and later stages of
learning physiotherapy techniques.
21
competent, willing, and supported and therapists
need to be skilled to work with the parent and child
to achieve this ( Harrison et al, 2007).
The physiotherapist’s role is both complex and
changeable (Seideman & Kleine, 1995). As a
facilitator of learning, physiotherapists require
expertise in:
• teaching exercise;
• demonstrating techniques of stretching;
• creating written advice sheets;
• supporting learning for varying learning styles,
competencies and social backgrounds;
• troubleshooting during difficult times;
• guiding and coaching parents in problem.
Teaching skills are not always directly taught, but
develop through experiential opportunities,
reflective practice, evidence based practice,
literature, and based on clinical reasoning (Graham
et al, 2009).
The majority of physiotherapists have no formal
teaching qualifications. It is proposed, but not yet
proven, that to be able to instruct a caregiver
(Forrest, 2004) that physiotherapists need to be able
to:
• transfer knowledge;
• improvise and modify to different learning
environments and social contexts;
• respond to different goals;
• remain dynamic at all times - to maintain
learner engagement and motivation;
• respond to the changes of time, learner
expertise, changes in relationships, goals, needs;
• show technical expertise;
• retain moral standards.
Motivation and goals relating to hopes and fears of
the parent for the child seem to underpin learning
needs (Braga et al, 2005). Theories of trust and
confidence requirements in learning facilitation can
be drawn from andrology, and feelings of success
from cognitive theory (Dobbin, 2001). Parts of
behavioural theory too can be drawn upon when
interpreting some of the task related experiences
(Hughes, 1999).
Little is known about the learning preferences of
parents (Ross & Thomson, 1993). There is little
evidence on what influences the ability to learn
techniques, but some evidence of a link between
therapeutic relationship, empathy and success
(Harrison et al, 2007; McIntosh & Runciman, 2008;
Gladwin, 2012). Table 1 shows elements of adult
learning as suggested by Forrest (2004).
20
Elements of adult learning
How they are demonstrated
Accumulation of experience Independence increases, reactions
to learning new information is
supported by values and beliefs
and community trusts were received. Ethics
approvals were received from both the University of
Brighton and NHS ethics London-Surrey Borders
committees. Parents were required to sign an
informed consent form.
framework gave a specific frame of reference to the
hermeneutic phenomenological study (Sanders,
2003). Colaizzi’s framework of reference is shown in
Table 2.
Stages of Interpretation (1-7) Reasoning
Developmental trends
Adults are receptive to learning
after major life events
Anxiety and ambivalence
There is gradual willingness to
take responsibility in own learning
Autonomy and self-direction Learning activities reflect
personal interests
Goal-orientation
Know own objectives of learning
and value clearly defined
programmes
Practicality and relevancy
orientation
There has to be a reason or value
in the application of learning
Table 1 - Adult learning theory (Forrest, 2004)
Though research demonstrates physiotherapists’
belief in the effectiveness of care provision (Hinojosa
et al, 2002), parents’ perceptions of the benefits in
delivery, are unknown (Price & Miner, 2009). There
are perceived problems with delivering HEPs, such
as: non-optimal environments; hands on therapy
being ‘watered down’; burdensome and interfering
with family life (Litchfield & MacDougall, 2002).
Without emotional resilience, combined with learner
support, there may be difficulty in motivating or
maintaining learning (Harrison et al, 2007).
The aim of this study was:
a) to explore the learning experiences of parents
whose children required physiotherapy
interventions;
b) to capture the shared experiences of parents and
formulate meanings that would be generalisable to
current physiotherapy practice.
Methodology
Design
An iterative (hermeneutic) phenomenological
qualitative study. This approach explores the
interpretation of the true meanings of lived
experiences, through narrative analysis and by use
of an analytical framework.
There is no one true result or meaning to this study,
but the results reflect logical and plausible findings
by using a framework (Lopez & Willis, 2004).
Regulatory approval and ethics
Approval and sponsorship from the research and
clinical governance department within the hospital
Participant selection
Convenience sampling was used to select parents in
southeast England. The cohorts shared similar
experiences and were available within the time
limitations and parameters of this study. A total of
six parents were interviewed including two male
and four female participants. Original recruitment
numbers were nine, but the remaining interviews
could not take place due to difficulties in agreeing
times to suit the potential participants within the
constraints of time available to complete the
research. Parents had children with a variety of long
term physical conditions of varied ages and also had
varied amounts of experience. This added to the
richness of the results.
Inclusion criteria
Parent/carer of a child or children with a long term
physical condition, currently receiving
physiotherapy in West Sussex and responsible for
applying the physiotherapy skills taught for a
minimum of six months. Data on the child was not
collected because this study was not disease specific.
The parent/carer may be of either gender and could
be long term foster or adopted parent.
Exclusion criteria
Parents/carers whose experiences of physiotherapy
have been outside of the UK and/or being less than
16 years of age.
Procedures and data analysis
Reflective notes were recorded throughout the
process, developed and integrated into emerging
concepts to add rigor to the chosen methodology.
In-depth unstructured interviews were undertaken
either in a private room at the hospital or at the
participant’s home and lasted about 60 minutes. The
interviews were audio recorded and transcribed
verbatim soon after the completion of the interview.
A Sony IC electronic Dictaphone recorder was used
with a discreet microphone, which was placed
between the participant and interviewer. Sample
open ended questions guided the interview, and
were developed for subsequent interviews
(Appendix 1).
Utilizing Colaizzi’s (1978) 7 stage method of
analysis, interpretation of the data was rigorously
and logically employed. The clarity provided by this
ensured an audit trail of decisions made adding
credibility and reliability. The orientating
1. Acquiring a sense of each
transcript
Feeling ideas in order to
understand them
2. Extracting significant
statements
To form the meaning of the
experience
3. Formulations of meanings
Reflecting on my own
assumptions and enabling
direction of thinking.
4. Organizing formulated
meanings into clusters of
themes
Giving clarity to the process
of how the themes emerged
5. Exhaustively describing the To ensure all elements of the
investigated phenomenon experience are included
6. Describing the fundamental To make meaning of the
structure of the
exhaustive and lengthy
phenomenon
descriptions
7. Returning to the
participants
Final and essential validation
to ensure the phenomenon
represents the parent’s
experiences.
Table 2 - Colaizzi’s Seven Stage Method (Sanders, 2003)
Each transcribed interview was coded. By using
theoretical sampling, emergence of ideas or lack of
complete concepts directed further interviews.
Earlier interviews were re-examined to ensure
thorough analysis. Each parent was given
opportunity to amend the transcripts. The process
allowed analytical questions to be asked and
reflection was integral. Peer and participant
debriefing and evaluation was sought to ensure
further trustworthiness of the interpretations.
Results
The essence of parents’ experiences was about roles
and relationships, the meaning and context of
learning physiotherapy and the things that
influence the learning journey, both emotional and
tangible. The third and fourth stage of Colaizzi
analysis creates emergent themes. There were 16
emergent themes. Through further stages of the
Colaizzi framework, once the phenomenon has been
exhaustively written, three clear major themes were
defined (Appendix 2).
Both positive and negative experiences were shared
and there was diversity in experience as the parents
involved were both at the early and later stages of
learning physiotherapy techniques.
21
Findings are organised into three major themes:
• the relevance of relationships and roles;
• the relevance of learning physiotherapy - its
meaning and context;
• doing physiotherapy techniques - enabling and
influencing, practicalities, barriers and tangible
things.
child’s physical skills. In time developing expertise
and understanding and signs of co-therapy skills can
be seen. An accumulation of experience aids
learning. The personal relationships between the
child, therapist and the parent either builds trust
which aids learning, or is destructive which is linked
with perceptions of therapeutic failure.
The relevance of relationships and roles
Parent 5 - “I mean there was one in particular that we
really, I would say really clashed with and that made
physio a real problem. I mean I think we saw the
physiotherapist as a problem and I think she probably
equally viewed us as a problem. And our relationship was
really bad, which then impacted on (child)”
Parent 1 - “You name it, I’ve got that career, you know”
Teaching physiotherapy needs to be relationship
centred; care and learning cannot be separated.
Learning activities reflect personal interests. The
parent wants to parent, and the learner role is
special, unique and requires autonomous and self
directed skills.
Parent 4 - “I suppose. I see professional people I don’t
tend to question their judgement, do you know what I
mean”
The therapist must act within the teacher role;
providing information, feedback, motivation and
ongoing support when the learner needs it,
especially at the start, and at points of change.
Change may come in many forms, including
stressful experiences, or changes in therapeutic
programme or prescription.
Parent 6 - “I keep thinking that her feet are still turning
out and part of me thinks well if her feet were like that
surely the bones need to take a while, the muscles or
whatever, to learn to stay in a more stable. You know I
don’t know whether or not she needs the Piedro shoes still,
I don’t know. Do you know what I mean? I don’t know”
The intensity in support is generally reduced over
time, but intense trouble shooting support is
required at times of crisis.
External support networks are crucial for the parent
to feel accepted, but also to demonstrate empathy
and support for those also living the shared
experience of parenting a child with both additional
and therapeutic needs. During the learning process,
many examples of turning to friends and family, or
internet blogs rather than asking the physiotherapist
were seen.
Parent 2 - “Actually we’ve done quite a lot of research
reading on Google…”
Life has to be more than physiotherapy. Breaks and
normality are required to reduce the stress and
burden of therapy for both parent and child.
In time parents work out their own strategies for
problem solving, doing HEPs, and developing their
22
The relevance of learning physiotherapy
techniques; its meaning and context
Parent 2 - “I don’t think she thinks that we’re hurting her
on purpose but she hasn’t got a comprehension that we
need to do this”
Physiotherapy needs to have meaning and context.
The activities parents learn have direct relevance to
their social activities, family life and relate to the
child’s age, skills and interests.
Parent 5 - “I think that it’s always there, because no
matter how, what shape the evening’s taken, which can
vary day to day depending on the mood of the children or
you know, what the cat’s knocked over and smashed, so
you know, there’s always something which throws you,
you know the best laid plans”
Parents cannot engage in learning physiotherapy
techniques when life’s stressors create a barrier to
the learning process. Experiences of coming to terms
with diagnosis and/or acceptance of the child’s
additional needs affect ability to learn and retain the
skills, not necessarily the willingness to carry out
physiotherapy techniques.
Parent 5 - “I think in the beginning with the physio I
don’t think we took as much interest in it as we do now.
Because I think we were still really struggling with the
diagnosis and because he was still so small, we still kind of
were in the belief that actually maybe they had this all
wrong and so he didn’t actually really need this physio, so
what a waste of time”
Physiotherapy needs to have the ‘feel good’ factor if
the parent is to engage in it. The parent has to feel
the child is having fun whilst they are carrying out
the physiotherapy techniques.
The fundamental understanding of what learning
physiotherapy techniques means to a parent is
crucial, if we are to engage them in learning. The
parent requires a deeper understanding of the
biological, anatomical, physiological and
biomechanical underpinnings of human function.
Parents showed a desire for information.
Parent 2 - “I thought oh my god am I going too high, am
I going to pull a muscle with him or something, you
know. But as time went on eventually you just do it with
your eyes closed pretty much.“
A parent needs to build confidence and
understanding of their own learning abilities. Early
learning experiences show ambivalence and anxiety.
Trusting relationships are required to empower the
parent in feeling successful.
Parent 6 - “So it was then that understanding that
you’ve now got to do everything you can to try and help
that, you know, (child’s) not going to play catch up like
we’d hoped. So now we really need to do what we can to
try and help”
Parents have to have some form of goal orientation
that to do physiotherapy treatments will help their
child. To not do it, would let their child down.
They have to believe in it.
Doing physiotherapy techniques: enabling and
things
Parent 1 - “The only reason that we can actually fit in
what we’re doing basically is ‘cos I’ve packed in work and
become her carer”
A parent needs to be able. Time, financial stress,
other children, poor housing, not having equipment,
not having space, fitting in all other therapies, all
impact on learning.
Seeing their child progress with physiotherapeutic
activities builds the parent’s confidence in
physiotherapy. This leads to the belief in
physiotherapy. This belief needs to be established as
part of the learning experience.
The setting has an impact on learning, whether it’s
seeing one environment as official, important, or as
not relevant for an activity, or there not being
enough toys, or the right equipment. Smell, touch
and tactile experience can be relevant.
Parent 1 - “You’ve still got an element of you know, I’m
not a physio. I’m not a professional physiotherapist or an
OT or anything like that …”
Parent 3 - “The hospital environment is, it’s more formal
so it seems more of a, it’s like being in school, it’s like you
have, you know, there’s an atmosphere of like this is a new
school, you’ve got to learn how to do it. Here is how you
do it. This is actually quite serious, it is something that
can make a huge benefit and you’ve got to really
concentrate on it, whereas at home it can be a bit like well
it’s just a bit of fun, it’s a bit of playing and it doesn’t
have that gravitas almost”
Discussion
Factors that influence learning
In this study, though trust was crucial, support and
knowledge development often fell externally to web
sites, internet blogs and support groups. A shift in
learning methods, cultural differences or differences
in subjective analysis could be the reason for this
difference. A belief in physiotherapy was required
to establish learning. This study included parents of
older children, which may be significant as previous
studies have concentrated on parents of the preschool age group (Hinjosa et al, 2002). The parents
saw the physiotherapist primarily for expertise.
Without the professional relationship destruction in
the learning process, a lack of confidence, and
questioning therapeutic decision-making occurred.
This aids current understanding of
physiotherapist/parent roles.
Are caregivers satisfied?
Previous studies have raised issues in provision and
timing of information giving (Pickering & Payne,
2004). This study showed an early desire for
information of the fundamental understanding of
physiology and anatomy. Parents lacked confidence
in early learning, which could be linked to lack of
knowledge.
In early experiences, points of change, or life stress,
close contact with the therapist was vital. This
similar finding can be seen in literature (Tétreault et
al, 2003; Harrison et al, 2007). The tasks being
described by parents were not necessarily technical
or complex but still overwhelmed them.
Ambivalence to the underlying fears that underpin
these difficulties needs further research. Satisfaction
and engagement was reported with activities parent
felt both comfortable with and felt the child enjoyed.
Having the ‘feel good factor’ of an activity impacted
directly on compliance. This empirical result may
answer the question of why some clients would
engage in some therapeutic activities, but not
others, and may be generalisable.
The impact of therapy on carers
Evidence of caregiver strain emerged. Learning
experiences were inextricably linked to stress and
degree of learner support, as seen in previous
literature (Harrison et al, 2007). The struggle
between being a parent and co-therapist both
presented as an emotional and a practical issue.
23
Findings are organised into three major themes:
• the relevance of relationships and roles;
• the relevance of learning physiotherapy - its
meaning and context;
• doing physiotherapy techniques - enabling and
things.
child’s physical skills. In time developing expertise
and understanding and signs of co-therapy skills can
be seen. An accumulation of experience aids
learning. The personal relationships between the
child, therapist and the parent either builds trust
which aids learning, or is destructive which is linked
with perceptions of therapeutic failure.
The relevance of relationships and roles
Parent 5 - “I mean there was one in particular that we
really, I would say really clashed with and that made
physio a real problem. I mean I think we saw the
physiotherapist as a problem and I think she probably
equally viewed us as a problem. And our relationship was
really bad, which then impacted on (child)”
Parent 1 - “You name it, I’ve got that career, you know”
Teaching physiotherapy needs to be relationship
centred; care and learning cannot be separated.
Learning activities reflect personal interests. The
parent wants to parent, and the learner role is
special, unique and requires autonomous and self
directed skills.
Parent 4 - “I suppose. I see professional people I don’t
tend to question their judgement, do you know what I
mean”
The therapist must act within the teacher role;
providing information, feedback, motivation and
ongoing support when the learner needs it,
especially at the start, and at points of change.
Change may come in many forms, including
stressful experiences, or changes in therapeutic
programme or prescription.
Parent 6 - “I keep thinking that her feet are still turning
out and part of me thinks well if her feet were like that
surely the bones need to take a while, the muscles or
whatever, to learn to stay in a more stable. You know I
don’t know whether or not she needs the Piedro shoes still,
I don’t know. Do you know what I mean? I don’t know”
The intensity in support is generally reduced over
time, but intense trouble shooting support is
required at times of crisis.
External support networks are crucial for the parent
to feel accepted, but also to demonstrate empathy
and support for those also living the shared
experience of parenting a child with both additional
and therapeutic needs. During the learning process,
many examples of turning to friends and family, or
internet blogs rather than asking the physiotherapist
were seen.
Parent 2 - “Actually we’ve done quite a lot of research
reading on Google…”
Life has to be more than physiotherapy. Breaks and
normality are required to reduce the stress and
burden of therapy for both parent and child.
In time parents work out their own strategies for
problem solving, doing HEPs, and developing their
22
The relevance of learning physiotherapy
techniques; its meaning and context
Parent 2 - “I don’t think she thinks that we’re hurting her
on purpose but she hasn’t got a comprehension that we
need to do this”
Physiotherapy needs to have meaning and context.
The activities parents learn have direct relevance to
their social activities, family life and relate to the
child’s age, skills and interests.
Parent 5 - “I think that it’s always there, because no
matter how, what shape the evening’s taken, which can
vary day to day depending on the mood of the children or
you know, what the cat’s knocked over and smashed, so
you know, there’s always something which throws you,
you know the best laid plans”
Parents cannot engage in learning physiotherapy
techniques when life’s stressors create a barrier to
the learning process. Experiences of coming to terms
with diagnosis and/or acceptance of the child’s
additional needs affect ability to learn and retain the
skills, not necessarily the willingness to carry out
physiotherapy techniques.
Parent 5 - “I think in the beginning with the physio I
don’t think we took as much interest in it as we do now.
Because I think we were still really struggling with the
diagnosis and because he was still so small, we still kind of
were in the belief that actually maybe they had this all
wrong and so he didn’t actually really need this physio, so
what a waste of time”
Physiotherapy needs to have the ‘feel good’ factor if
the parent is to engage in it. The parent has to feel
the child is having fun whilst they are carrying out
the physiotherapy techniques.
The fundamental understanding of what learning
physiotherapy techniques means to a parent is
crucial, if we are to engage them in learning. The
parent requires a deeper understanding of the
biological, anatomical, physiological and
biomechanical underpinnings of human function.
Parents showed a desire for information.
Parent 2 - “I thought oh my god am I going too high, am
I going to pull a muscle with him or something, you
know. But as time went on eventually you just do it with
your eyes closed pretty much.“
A parent needs to build confidence and
understanding of their own learning abilities. Early
learning experiences show ambivalence and anxiety.
Trusting relationships are required to empower the
parent in feeling successful.
Parent 6 - “So it was then that understanding that
you’ve now got to do everything you can to try and help
that, you know, (child’s) not going to play catch up like
we’d hoped. So now we really need to do what we can to
try and help”
Parents have to have some form of goal orientation
that to do physiotherapy treatments will help their
child. To not do it, would let their child down.
They have to believe in it.
Doing physiotherapy techniques: enabling and
things
Parent 1 - “The only reason that we can actually fit in
what we’re doing basically is ‘cos I’ve packed in work and
become her carer”
A parent needs to be able. Time, financial stress,
other children, poor housing, not having equipment,
not having space, fitting in all other therapies, all
impact on learning.
Seeing their child progress with physiotherapeutic
activities builds the parent’s confidence in
physiotherapy. This leads to the belief in
physiotherapy. This belief needs to be established as
part of the learning experience.
The setting has an impact on learning, whether it’s
seeing one environment as official, important, or as
not relevant for an activity, or there not being
enough toys, or the right equipment. Smell, touch
and tactile experience can be relevant.
Parent 1 - “You’ve still got an element of you know, I’m
not a physio. I’m not a professional physiotherapist or an
OT or anything like that …”
Parent 3 - “The hospital environment is, it’s more formal
so it seems more of a, it’s like being in school, it’s like you
have, you know, there’s an atmosphere of like this is a new
school, you’ve got to learn how to do it. Here is how you
do it. This is actually quite serious, it is something that
can make a huge benefit and you’ve got to really
concentrate on it, whereas at home it can be a bit like well
it’s just a bit of fun, it’s a bit of playing and it doesn’t
have that gravitas almost”
Discussion
Factors that influence learning
In this study, though trust was crucial, support and
knowledge development often fell externally to web
sites, internet blogs and support groups. A shift in
learning methods, cultural differences or differences
in subjective analysis could be the reason for this
difference. A belief in physiotherapy was required
to establish learning. This study included parents of
older children, which may be significant as previous
studies have concentrated on parents of the preschool age group (Hinjosa et al, 2002). The parents
saw the physiotherapist primarily for expertise.
Without the professional relationship destruction in
the learning process, a lack of confidence, and
questioning therapeutic decision-making occurred.
This aids current understanding of
physiotherapist/parent roles.
Are caregivers satisfied?
Previous studies have raised issues in provision and
timing of information giving (Pickering & Payne,
2004). This study showed an early desire for
information of the fundamental understanding of
physiology and anatomy. Parents lacked confidence
in early learning, which could be linked to lack of
knowledge.
In early experiences, points of change, or life stress,
close contact with the therapist was vital. This
similar finding can be seen in literature (Tétreault et
al, 2003; Harrison et al, 2007). The tasks being
described by parents were not necessarily technical
or complex but still overwhelmed them.
Ambivalence to the underlying fears that underpin
these difficulties needs further research. Satisfaction
and engagement was reported with activities parent
felt both comfortable with and felt the child enjoyed.
Having the ‘feel good factor’ of an activity impacted
directly on compliance. This empirical result may
answer the question of why some clients would
engage in some therapeutic activities, but not
others, and may be generalisable.
The impact of therapy on carers
Evidence of caregiver strain emerged. Learning
experiences were inextricably linked to stress and
degree of learner support, as seen in previous
literature (Harrison et al, 2007). The struggle
between being a parent and co-therapist both
presented as an emotional and a practical issue.
23
Family life impacted on time available to do therapy,
and the therapy itself took effort and planning,
which in turn was burdensome. Important,
meaningful, and relevant activities were often part of
the HEP, and it here where the battle of guilt and
justification emerged. The burden of therapy lies
beyond the scope of this project, and requires further
investigation. There was also a clear need for
effective social support networks, as shown in
previous research (Moos, 2002). Initiating and
supporting opportunities for parents to gain mutual
support is suggested to be beneficial to aid learning.
Similar to previous research (Stewart & NeyerlinBeale, 2000), parents reported an increased sense of
achievement from learning therapeutic techniques
when the child demonstrated increased
independence.
Readiness in learning appears to be impeded by
emotional stressors. Willingness to engage was not
always disrupted, but signs of acopia and a
decreased ability to engage in learning was apparent.
Dependence on the therapist as expert here was
preferred, and should be recognised in clinical
practice. Parents did not articulate a specific time
frame when learner readiness was reached; some
had not yet reached it. Periods of time and events
where they felt things changed or became easier
were however described, alluding to attitude change
and a realisation of the need to do physiotherapy,
similarities are reflected in previous research
(Seideman & Kleine, 1995; Piggot et al, 2002).
Expertise was demonstrated with expert learner
traits, confidence, and acceptance of their child’s
level of needs. Parent/child relationship strength, a
desire for achievement, and a point of breakthrough
when the parent recognizes an importance of their
role emerged from the data. This has not been
demonstrated in physiotherapy research previously,
and is a strength of this study.
Evaluating partnerships
The fluctuating journey of parent involvement was a
continuum of needs, which was led by crisis, fear
and knowledge. In all cases there were distinct parts
to therapeutic engagement. For early learners and
where current needs were changing, partnerships
were unequal and dependent on the expert doing
therapy was demonstrated. Active promotion of
early collaborative practice within the health care
system (Price & Miner, 2009) does not take into
account the ability to engage in the practice. The
shift in FCC had placed an expectation on carers
making challenging decisions during their early
experiences. In the face of accepting diagnosis,
unexpected caring obligations and coping with the
24
enormity of learning new skills readiness cannot be
achieved. This study shows partnership working
was not always expected, not immediate to establish,
and equality was not always preferred. Learning
itself is alien and cannot be forced or be without high
levels of support, motivation and trust. Like any
learning experience, feedback is needed, tact
required and underlying knowledge shared, but
being ready to learn and able to practice and feel safe
to do so perhaps is a responsibility too great unless
much higher levels of learner support are offered.
This itself is a major challenge faced by a resource
limited NHS (McIntosh & Runciman, 2008).
Collaboration and compliance
This study showed that physiotherapists are
perceived as requiring a relationship centred
teaching role. If the therapy is perceived as relevant
then parents are likely to collaborate in it. This is
supported by literature (Schreiber et al, 2011).
Previous studies have suggested that HEPs being
short and simple increased compliance. Contrary to
this, this study showed the parent needing more
support and practice before achieving collaboration
despite HEP simplicity.
A component of the collaborative working model is
that there is a preference for physiotherapy to take
place in the naturalistic environment (child’s home
or school). In this study parents didn’t always report
home or school as the preferred place to start the
physiotherapy learning journey, rather they
expressed varied preferences and emphasised the
relevance of different environments such as the
hospital or children centre settings as preferred
locations. This is a new and unexpected finding that
may need further exploration in future research.
Expectations on parents as partners
Previous studies recommend increasing support for
parents coming to terms with disability, supporting
this study’s findings. Role expectations, however,
are different to those seen in previous research
(Hinojosa et al, 2002).
The parent may not have an understanding of their
role; they may not be ready to engage in learning.
Exploring parental goals may be less important than
building a basic anatomical knowledge. Being able
to do physiotherapy techniques comes when there is
a meaning to it. Therapists need to understand the
early ambivalence, despair and anxiety that have
been demonstrated in this study. Parents require the
ability and desire to speak about their needs, fears
and preferences. Parents shared their experiences
where they lacked confidence to share concerns,
where they felt judged.
Health, psychological distress and learning
Many aspects of care interfered with the ability to
both learn and perform HEPs. Practical issues such
as other children, environmental issues such as lack
of space and financial strain caused stress and guilt,
and are supported in literature (Rosenbaum, 2008).
Family lives were busy, and often the addition of
several therapeutic engagements were prioritised,
but the sense of not being able to do enough, and
often the urge for rest from therapeutic activities
emerged as patterns of loss and grief coupled with
difficulties with recall of specific therapeutic
activities. The need for routines and regular family
activities counteracted negative responses and
appeared as strategies for coping, emerging as
acceptance of the child’s needs appeared.
Methods of learning
Knowledge and skills were gained through similar
learning methods: watching; hands on practice;
reading; and use of diagrams. But more importantly
was the access to the therapist to update learning
requirements and provide learning support when
new activities were taught. Similarities were
reported in literature (Novak & Cusick, 2006). Post
graduate teaching may have a role in offering
support for physiotherapists developing empathetic,
supportive teaching skills.
Although an evaluation of the educational
backgrounds was not established and may limit
conclusions, it was apparent the cross section of
parents who participated came from varied
backgrounds, lifestyles and careers. This concurs
with evidence that competence in learning does not
relate to educational levels (Braga et al, 2005).
Parents often referred to the content of
physiotherapy that was difficult to learn. There were
many requests for information on video, in
workshops, writing or in pictures. Improving how
we deliver basic information could help justify and
motivate parents to do the activities safely and
effectively. The lack of confidence, negative child
reactions and memories of the fear of causing pain to
their child were prominent and need to be
recognised. Not only do parents need to trust the
physiotherapist, but need to believe in, understand,
and be confident in the techniques being taught
(Hughes, 1999). Ways of promoting feelings of
safety should be considered by physiotherapists.
Facilitators of learning
Good learning comes from nurtured and mutually
respective relationships. Conditions for learning can
be inferred from this study: positivity; rationality;
tolerance; and mutually existing values (Hughes,
1999).
Key approaches to facilitating learning may be
drawn upon from clinical education: the need for
structure; adapting to the learners’ needs; providing
observations; hands on learning; feedback; access for
support as required; being positive about engaging
in activities; and being family centred (Moore et al,
1997). All of these needs were demonstrated within
the phenomenon, both positively and negatively.
Physiotherapists should be mindful of their teaching
practices.
In this qualitative study, seeking a truthful and
credible interpretation has been the aim, even if the
actual truth can only be tentatively determined due
to acknowledged prejudices and subjective
perspective. As an individual, and physiotherapy
clinician, this may have been both a limitation and
strength at times within the research process.
Further research may benefit from multiple opinions,
either from group analysis or differing methodology
to reduce bias. All efforts were made to reduce bias
and acknowledgement through the hermeneutic
methodology demonstrates the benefits of the expert
knowledge in this type of research.
A change in ontological stance may have driven
different interpretation of the results. The
implications on current practice may be tentatively
drawn, as such a small study and singular
perspective does not set out to justify or explain why
phenomena occurred.
Conclusion
This study explored the experiences of learning
physiotherapy in a small group of British parents
using hermeneutic phenomenology.
An opportunity to explore the phenomenon in more
depth was not possible, and a larger study would be
beneficial. Future research could explore role
perceptions or observe learning in context: exploring
teaching strategies; empathy; and recognising
learner readiness. Long term evaluation on the
impact of timing on the delivery of HEPs may be
valuable. Observational studies of the interactions
between therapists and parents in different
environments would add to this body of work.
Teaching physiotherapy cannot be isolated from the
parents, children, and families' lives. The therapist
must be capable of building a trusting relationship
and interpreting the signs of learner readiness to
gain confidence and compliance. As a teacher, the
physiotherapist must demonstrate all aspects of that
role to facilitate and support learning, particularly in
times of stress or during change. An accumulation
of experience and coming to terms with diagnosis
25
Family life impacted on time available to do therapy,
and the therapy itself took effort and planning,
which in turn was burdensome. Important,
meaningful, and relevant activities were often part of
the HEP, and it here where the battle of guilt and
justification emerged. The burden of therapy lies
beyond the scope of this project, and requires further
investigation. There was also a clear need for
effective social support networks, as shown in
previous research (Moos, 2002). Initiating and
supporting opportunities for parents to gain mutual
support is suggested to be beneficial to aid learning.
Similar to previous research (Stewart & NeyerlinBeale, 2000), parents reported an increased sense of
achievement from learning therapeutic techniques
when the child demonstrated increased
independence.
Readiness in learning appears to be impeded by
emotional stressors. Willingness to engage was not
always disrupted, but signs of acopia and a
decreased ability to engage in learning was apparent.
Dependence on the therapist as expert here was
preferred, and should be recognised in clinical
practice. Parents did not articulate a specific time
frame when learner readiness was reached; some
had not yet reached it. Periods of time and events
where they felt things changed or became easier
were however described, alluding to attitude change
and a realisation of the need to do physiotherapy,
similarities are reflected in previous research
(Seideman & Kleine, 1995; Piggot et al, 2002).
Expertise was demonstrated with expert learner
traits, confidence, and acceptance of their child’s
level of needs. Parent/child relationship strength, a
desire for achievement, and a point of breakthrough
when the parent recognizes an importance of their
role emerged from the data. This has not been
demonstrated in physiotherapy research previously,
and is a strength of this study.
Evaluating partnerships
The fluctuating journey of parent involvement was a
continuum of needs, which was led by crisis, fear
and knowledge. In all cases there were distinct parts
to therapeutic engagement. For early learners and
where current needs were changing, partnerships
were unequal and dependent on the expert doing
therapy was demonstrated. Active promotion of
early collaborative practice within the health care
system (Price & Miner, 2009) does not take into
account the ability to engage in the practice. The
shift in FCC had placed an expectation on carers
making challenging decisions during their early
experiences. In the face of accepting diagnosis,
unexpected caring obligations and coping with the
24
enormity of learning new skills readiness cannot be
achieved. This study shows partnership working
was not always expected, not immediate to establish,
and equality was not always preferred. Learning
itself is alien and cannot be forced or be without high
levels of support, motivation and trust. Like any
learning experience, feedback is needed, tact
required and underlying knowledge shared, but
being ready to learn and able to practice and feel safe
to do so perhaps is a responsibility too great unless
much higher levels of learner support are offered.
This itself is a major challenge faced by a resource
limited NHS (McIntosh & Runciman, 2008).
Collaboration and compliance
This study showed that physiotherapists are
perceived as requiring a relationship centred
teaching role. If the therapy is perceived as relevant
then parents are likely to collaborate in it. This is
supported by literature (Schreiber et al, 2011).
Previous studies have suggested that HEPs being
short and simple increased compliance. Contrary to
this, this study showed the parent needing more
support and practice before achieving collaboration
despite HEP simplicity.
A component of the collaborative working model is
that there is a preference for physiotherapy to take
place in the naturalistic environment (child’s home
or school). In this study parents didn’t always report
home or school as the preferred place to start the
physiotherapy learning journey, rather they
expressed varied preferences and emphasised the
relevance of different environments such as the
hospital or children centre settings as preferred
locations. This is a new and unexpected finding that
may need further exploration in future research.
Expectations on parents as partners
Previous studies recommend increasing support for
parents coming to terms with disability, supporting
this study’s findings. Role expectations, however,
are different to those seen in previous research
(Hinojosa et al, 2002).
The parent may not have an understanding of their
role; they may not be ready to engage in learning.
Exploring parental goals may be less important than
building a basic anatomical knowledge. Being able
to do physiotherapy techniques comes when there is
a meaning to it. Therapists need to understand the
early ambivalence, despair and anxiety that have
been demonstrated in this study. Parents require the
ability and desire to speak about their needs, fears
and preferences. Parents shared their experiences
where they lacked confidence to share concerns,
where they felt judged.
Health, psychological distress and learning
Many aspects of care interfered with the ability to
both learn and perform HEPs. Practical issues such
as other children, environmental issues such as lack
of space and financial strain caused stress and guilt,
and are supported in literature (Rosenbaum, 2008).
Family lives were busy, and often the addition of
several therapeutic engagements were prioritised,
but the sense of not being able to do enough, and
often the urge for rest from therapeutic activities
emerged as patterns of loss and grief coupled with
difficulties with recall of specific therapeutic
activities. The need for routines and regular family
activities counteracted negative responses and
appeared as strategies for coping, emerging as
acceptance of the child’s needs appeared.
Methods of learning
Knowledge and skills were gained through similar
learning methods: watching; hands on practice;
reading; and use of diagrams. But more importantly
was the access to the therapist to update learning
requirements and provide learning support when
new activities were taught. Similarities were
reported in literature (Novak & Cusick, 2006). Post
graduate teaching may have a role in offering
support for physiotherapists developing empathetic,
supportive teaching skills.
Although an evaluation of the educational
backgrounds was not established and may limit
conclusions, it was apparent the cross section of
parents who participated came from varied
backgrounds, lifestyles and careers. This concurs
with evidence that competence in learning does not
relate to educational levels (Braga et al, 2005).
Parents often referred to the content of
physiotherapy that was difficult to learn. There were
many requests for information on video, in
workshops, writing or in pictures. Improving how
we deliver basic information could help justify and
motivate parents to do the activities safely and
effectively. The lack of confidence, negative child
reactions and memories of the fear of causing pain to
their child were prominent and need to be
recognised. Not only do parents need to trust the
physiotherapist, but need to believe in, understand,
and be confident in the techniques being taught
(Hughes, 1999). Ways of promoting feelings of
safety should be considered by physiotherapists.
Facilitators of learning
Good learning comes from nurtured and mutually
respective relationships. Conditions for learning can
be inferred from this study: positivity; rationality;
tolerance; and mutually existing values (Hughes,
1999).
Key approaches to facilitating learning may be
drawn upon from clinical education: the need for
structure; adapting to the learners’ needs; providing
observations; hands on learning; feedback; access for
support as required; being positive about engaging
in activities; and being family centred (Moore et al,
1997). All of these needs were demonstrated within
the phenomenon, both positively and negatively.
Physiotherapists should be mindful of their teaching
practices.
In this qualitative study, seeking a truthful and
credible interpretation has been the aim, even if the
actual truth can only be tentatively determined due
to acknowledged prejudices and subjective
perspective. As an individual, and physiotherapy
clinician, this may have been both a limitation and
strength at times within the research process.
Further research may benefit from multiple opinions,
either from group analysis or differing methodology
to reduce bias. All efforts were made to reduce bias
and acknowledgement through the hermeneutic
methodology demonstrates the benefits of the expert
knowledge in this type of research.
A change in ontological stance may have driven
different interpretation of the results. The
implications on current practice may be tentatively
drawn, as such a small study and singular
perspective does not set out to justify or explain why
phenomena occurred.
Conclusion
This study explored the experiences of learning
physiotherapy in a small group of British parents
using hermeneutic phenomenology.
An opportunity to explore the phenomenon in more
depth was not possible, and a larger study would be
beneficial. Future research could explore role
perceptions or observe learning in context: exploring
teaching strategies; empathy; and recognising
learner readiness. Long term evaluation on the
impact of timing on the delivery of HEPs may be
valuable. Observational studies of the interactions
between therapists and parents in different
environments would add to this body of work.
Teaching physiotherapy cannot be isolated from the
parents, children, and families' lives. The therapist
must be capable of building a trusting relationship
and interpreting the signs of learner readiness to
gain confidence and compliance. As a teacher, the
physiotherapist must demonstrate all aspects of that
role to facilitate and support learning, particularly in
times of stress or during change. An accumulation
of experience and coming to terms with diagnosis
25
aids learning. Trouble shooting is required and
without enhanced support therapeutic engagement
and relationships may be jeopardised. Parents
require external support and gain benefits from
sharing their experiences with others living with a
child who has additional needs. Parents also need
therapeutic breaks since life and its stresses can
inhibit learning.
Physiotherapy needs to have the ‘feel good’ factor.
Parents need to understand the basic anatomical and
technical reasons to justify doing the HEP. A
physiotherapist must think to negotiate where, when
and how much to do. An empathy and
understanding of learner needs and abilities should
be continually sought and modified. Though current
service delivery within FCC and collaborative
practice are common practice, the realities of doing
so may not be expected, and require careful
explanation and negotiation. By presenting the
phenomenon, awareness should enhance clinical
practice and hence improve learning encounters and
therapeutic engagement. In the current climate of
the NHS, having time to invest in therapeutic groups
may not be feasible. Recommendations to further
explore the benefits of education models for parents
would be recommended. The implications of making
appropriate investments in time and knowledge may
improve the long term compliance of parents
delivering physiotherapy programmes for their
child, and reduce the burden of need later on from
the service provider.
The phenomenon takes a parent along a journey
where acceptance is required; trust and positive
experience is needed to build confidence; and
readiness to learn emerges. The experiences can be
good, bad, and certainly impact on the parent’s
future reactions, actions, and beliefs. The needs of
the parent as a learner bear some, but not complete
likeness to those seen in adult learning theory. An
understanding and consideration of parents as
learners could not only help individual therapeutic
relationships develop, but also reduce the strain on
practitioners in today’s NHS. If the experiences of
parents are positive, they are more likely to engage
and comply in the delivery of physiotherapy
programmes, and demand less time from the service
provider.
Acknowledgements
Thank you to Teresa Pountney, Chailey Heritage
Services and John Anderson, University of Brighton
for their valued support and encouragement.
Thank you to all the parents who participated in the
study.
26
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Price MP, Miner S (2009). Mother becoming: learning to
read Mikala’s signs. Scand J Occup Ther. 16(2):68-77.
Ross K, Thomson D (1993). An Evaluation of Parents’
Involvement in the Management of Their Cerebral Palsy
Children. Physiotherapy. 79(8):561-5.
Schreiber J, Benger J, Salls J, Marchetti G, Reed L (2011).
Parent Perspectives on Rehabilitation Services for Their
Children with Disabilities: A Mixed Methods Approach.
Phys Occup Ther Pediatr.
Seideman RY, Kleine PF (1995). A theory of transformed
parenting: parenting a child with developmental
delay/mental retardation. Nurs Res. 44(1):38-44.
Stewart S, Neyerlin-Beale J (2000). The Impact of
Community Paediatric Occupational Therapy on Children
With Disabilities and Their Carers. Britich Journal of
Occupational Therapy. 63(8):373-9.
Tétreault S, Parrot A, Trahan J (2003). Home activity
programs in families with children presenting with global
developmental delays: evaluation and parental
perceptions. Int J Rehabil Res. 26(3):165-73.
Wiart L, Ray L, Darrah J, Magill-Evans J (2010). Parents’
perspectives on occupational therapy and physical
therapy goals for children with cerebral palsy. Disabil
Rehabil. 32(3):248-58.
Appendix 1 - Sample interview questions
•
Can you tell me a little bit about your child, who receives physiotherapy?
•
Can you tell me a little bit about the physiotherapy you have experienced with your child?
•
Had you any previous experiences of physiotherapy either yourself, or a friend or family member?
Can you tell me what that was like?
•
Taking you back, when you first met a physiotherapist, what did you expect? Do you remember
how long ago that was?
•
Can you remember your first experience of doing some physiotherapy with your physiotherapist
and your child? What was it like? Have your things changed since then?
•
What do you think influenced your ability to learn the physiotherapy exercises then?
•
What was it like to have to go home with the physiotherapy programme at the start? Have things
changed since then?
•
Do you use equipment with your child? Can you tell me about learning how to use a piece of
physiotherapy equipment for your child
•
Do you remember and could you describe what was happening around the time when you had to
learn that technique?
•
Did things going on in your life impact on your ability to learn the physiotherapy at that time do you
think?
•
Can you think of things that help you with learning your child’s physiotherapy programme?
•
Can you tell me how you feel about having a physiotherapy programme for your child?
•
Do you feel there is ever too much to learn? Or that the physiotherapy is just too difficult?
27
aids learning. Trouble shooting is required and
without enhanced support therapeutic engagement
and relationships may be jeopardised. Parents
require external support and gain benefits from
sharing their experiences with others living with a
child who has additional needs. Parents also need
therapeutic breaks since life and its stresses can
inhibit learning.
Physiotherapy needs to have the ‘feel good’ factor.
Parents need to understand the basic anatomical and
technical reasons to justify doing the HEP. A
physiotherapist must think to negotiate where, when
and how much to do. An empathy and
understanding of learner needs and abilities should
be continually sought and modified. Though current
service delivery within FCC and collaborative
practice are common practice, the realities of doing
so may not be expected, and require careful
explanation and negotiation. By presenting the
phenomenon, awareness should enhance clinical
practice and hence improve learning encounters and
therapeutic engagement. In the current climate of
the NHS, having time to invest in therapeutic groups
may not be feasible. Recommendations to further
explore the benefits of education models for parents
would be recommended. The implications of making
appropriate investments in time and knowledge may
improve the long term compliance of parents
delivering physiotherapy programmes for their
child, and reduce the burden of need later on from
the service provider.
The phenomenon takes a parent along a journey
where acceptance is required; trust and positive
experience is needed to build confidence; and
readiness to learn emerges. The experiences can be
good, bad, and certainly impact on the parent’s
future reactions, actions, and beliefs. The needs of
the parent as a learner bear some, but not complete
likeness to those seen in adult learning theory. An
understanding and consideration of parents as
learners could not only help individual therapeutic
relationships develop, but also reduce the strain on
practitioners in today’s NHS. If the experiences of
parents are positive, they are more likely to engage
and comply in the delivery of physiotherapy
programmes, and demand less time from the service
provider.
Acknowledgements
Thank you to Teresa Pountney, Chailey Heritage
Services and John Anderson, University of Brighton
for their valued support and encouragement.
Thank you to all the parents who participated in the
study.
26
References
Braga LW, Da Paz AC, Ylvisaker M (2005). Direct cliniciandelivered versus indirect family-supported rehabilitation
of children with traumatic brain injury: a randomized
controlled trial. Brain Inj. 19(10):819-31.
Case-Smith J, Nastro MA (1993). The effect of occupational
therapy intervention on mothers of children with cerebral
palsy. Am J Occup Ther. 47(9):811-7.
Dobbin KR (2001). Applying learning theories to develop
teaching strategies for the critical care nurse. Don’t limit
yourself to the formal classroom lecture. Crit Care Nurs
Clin North Am. 13(1):1-11.
Murphy N, Christian B (2007). Disability in children and
young adults: the unintended consequences. Arch Pediatr
Adolesc Med. 161(10):930-2.
Rosenbaum P (2008). Families of children with chronic
conditions: opportunities to widen the scope of pediatric
practice. J Pediatr. 153(3):304-5.
Novak I, Cusick A (2006). Home Programmes in
Paediatric Occupational Therapy for Children with
Cerebral Palsy: Where to Start? Australian Occupational
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Sanders C (2003). Application of Colaizzi’s Method:
Interpretation of an Auditable Decision Trail by a Nivice
Researcher. Contemporary Nurse. 14:292-302.
Pickering D, Payne H (2004). Using Focus groups to
Evaluate Parental Satisfaction of Services for the Preschool Disabled Child. Association Of Paediatric
Chartered Physiotherapists Journal. March(110):15-21.
Forrest S (2004). Learning and teaching: the reciprocal
link. J Contin Educ Nurs. 35(2):74-9.
Piggot J, Hocking C, Paterson J (2003). Parental
adjustment to having a child with cerebral palsy and
participation in home therapy programs. Phys Occup
Ther Pediatr. 23(4):5-29.
Gladwin, J. Empathy in clinical interaction. What is it?
why does it matter? how is it done?. [Online] 2012 Sept 22
,accessed 2013 Jan 15. Available from URL
http://www.csp.org.uk/documents/SECRN-conferenceSeptember-2
Piggot J, Paterson J, Hocking C (2002). Participation in
home therapy programs for children with cerebral palsy: a
compelling challenge. Qual Health Res. 12(8):1112-29.
Glasscock R (2000). A phenomenological study of the
experience of being a mother of a child with cerebral
palsy. Pediatr Nurs. 26(4):407-10.
Graham F, Rodger S, Ziviani J (2009). Coaching parents to
enable children’s participation: an approach for working
with parents and their children. Aust Occup Ther J.
56(1):16-23.
Harrison C, Romer T, Simon MC, Schulze C (2007).
Factors influencing mothers’ learning from paediatric
therapists: a qualitative study. Phys Occup Ther Pediatr.
27(2):77-96.
Hinojosa J, Sproat CT, Mankhetwit S, Anderson J (2002).
Shifts in parent-therapist partnerships: twelve years of
change. Am J Occup Ther. 56(5):556-63.
Hughes C (1999). Facilitation in Context: Challenging
Some Basic Principles. Studies in Continuing Education.
21(1):21-43.
Litchfield R, MacDougall C (2002). Professional issues for
physiotherapists in family-centred and community-based
settings. Aust J Physiother. 48(2):105-12.
Lopez KA, Willis DG (2004). Descriptive versus
interpretive phenomenology: their contributions to
nursing knowledge. Qual Health Res. 14(5):726-35.
McIntosh J, Runciman P (2008). Exploring the role of
partnership in the home care of children with special
health needs: qualitative findings from two service
evaluations. Int J Nurs Stud. 45(5):714-26.
Moore A, Hilton R, Morris J, Caladine L, Bristow H (1997).
The Clinical Educator- Role Development. New York:
Churchill Livingstone.
Moos RH (2002). The mystery of human context and
coping: an unraveling of clues. Am J Community Psychol.
30(1):67-88.
Price MP, Miner S (2009). Mother becoming: learning to
read Mikala’s signs. Scand J Occup Ther. 16(2):68-77.
Ross K, Thomson D (1993). An Evaluation of Parents’
Involvement in the Management of Their Cerebral Palsy
Children. Physiotherapy. 79(8):561-5.
Schreiber J, Benger J, Salls J, Marchetti G, Reed L (2011).
Parent Perspectives on Rehabilitation Services for Their
Children with Disabilities: A Mixed Methods Approach.
Phys Occup Ther Pediatr.
Seideman RY, Kleine PF (1995). A theory of transformed
parenting: parenting a child with developmental
delay/mental retardation. Nurs Res. 44(1):38-44.
Stewart S, Neyerlin-Beale J (2000). The Impact of
Community Paediatric Occupational Therapy on Children
With Disabilities and Their Carers. Britich Journal of
Occupational Therapy. 63(8):373-9.
Tétreault S, Parrot A, Trahan J (2003). Home activity
programs in families with children presenting with global
developmental delays: evaluation and parental
perceptions. Int J Rehabil Res. 26(3):165-73.
Wiart L, Ray L, Darrah J, Magill-Evans J (2010). Parents’
perspectives on occupational therapy and physical
therapy goals for children with cerebral palsy. Disabil
Rehabil. 32(3):248-58.
Appendix 1 - Sample interview questions
•
Can you tell me a little bit about your child, who receives physiotherapy?
•
Can you tell me a little bit about the physiotherapy you have experienced with your child?
•
Had you any previous experiences of physiotherapy either yourself, or a friend or family member?
Can you tell me what that was like?
•
Taking you back, when you first met a physiotherapist, what did you expect? Do you remember
how long ago that was?
•
Can you remember your first experience of doing some physiotherapy with your physiotherapist
and your child? What was it like? Have your things changed since then?
•
What do you think influenced your ability to learn the physiotherapy exercises then?
•
What was it like to have to go home with the physiotherapy programme at the start? Have things
changed since then?
•
Do you use equipment with your child? Can you tell me about learning how to use a piece of
physiotherapy equipment for your child
•
Do you remember and could you describe what was happening around the time when you had to
learn that technique?
•
Did things going on in your life impact on your ability to learn the physiotherapy at that time do you
think?
•
Can you think of things that help you with learning your child’s physiotherapy programme?
•
Can you tell me how you feel about having a physiotherapy programme for your child?
•
Do you feel there is ever too much to learn? Or that the physiotherapy is just too difficult?
27
Have you experienced a physiotherapist helping you to problem solve any difficulties you had in
learning?
•
Can you tell me where your child received physiotherapy? Are there any of these you feel more able
to learn in?
•
Can you tell me if you manage to fit in physiotherapy into your family life? Have there been times
when this seemed difficult or even impossible? Can you tell me about a time when it was difficult?
Were you able to talk to your physiotherapist about that?
•
Have you experienced different ways of being taught by a physiotherapist?
•
How do you feel you learn best? Can you think of something that you feel you learnt well?
•
What things do you think help your experience of learning physiotherapy?
•
Do you feel there are things that can get in the way of your learning?
•
Are there times when learning physiotherapy has been easier for you?
•
Can you summarize your experiences of learning physiotherapy?
8
4d (1f2); support intensity
“when I look back. At the time I didn’t really know why. I thought you know I’m just not very good at all
of this, you know and that sort of thing, but. You know you look back now and you think that’s why, that’s why.
And you know, now, I don’t want to blow my own trumpet but you do you just do things now and you don’t
think anything of it “
1
9
25( 2m1); anatomy and meaning
“And because you don’t know what they’ve just felt to know where to stop, you don’t know whether
you’ve right have I gone too far or not far enough? “
2
10
41a(1f2); later experience
“if someone told me when I first moved in with my fella that I’d have to learn how to use an automatic
washing machine, I was like you’re having a laugh. I shrunk everything, it got stretched. Bless his
heart if you look at (child) as a washing machine, you know, now you do that with your eyes closed
but it comes with experience, the more I’ve worked with him the more confident I guess I became an
I’m you know, obviously (child) became more confident with me”
2
11
10(3f3); external support networks
“So it was actually really helpful to have someone who was like, no, you know, you just have to keep
working on things and help him, etc., essentially. If it is what it is, that you could do something about it,
which was quite helpful”
1
12
12a(4f6); life external to therapy
“I don’t want her disability ever to hold her back. I’d like her to try everything and if it doesn’t work,
okay let’s go and have a look at something else. I mean we’re looking at taking her skiing and I’ve been
looking at all of that for her”
1
Major
Theme number
•
13
56(3f3); I believe in physiotherapy
“(friend) was gutted because this was a little girl the same age as her daughter who she saw in clinic,
same diagnosis, cerebral palsy spastic diplegic and mother wouldn’t do anything, never bothered.
It’s awful, it’s really shocking”
2
1
14
14(1f2); being able
“where I just had no oomph to do it and the guilt you feel when you do that is just unreal.”
11a(5f7)
3
Emergent
Theme number
Appendix 2 – Quotes to represent the formulation of the themes
1
Quotation (coded, verbatim) examples
21b (2m1); relationships and roles
“And it’s not a case of oh we’re going to do this now. You’re constantly looking and just observing
what your child is doing”
4c(5f7)
“You feel out of your comfort zone I think as a parent. Because all of a sudden you’re having to rely
on someone coming in to do something for your child that you can’t do. And I think in the beginning
that can be quite upsetting, because as a parent you want to be able to do everything for your child
and all of a sudden once they’ve been diagnosed with additional needs, you’re out of your comfort
zone you can’t do it. So you’re quite reliant on people, particularly physios”
2
9b(Parent 4f6); early relationships
“it’s a struggle. Because we’ve got the other children you know, it’s not just (child)that we can
devote our time to”
5 (3f3); meaning and context for both parent and child
“He couldn’t go up and down stairs, you know, teaching him how to go up and down stairs, how to do
things. She had a fun way of making everything so he didn’t know he was working, he was just having fun”
42(1f2); becoming expert
“mean I roll (child) onto his side and I’m actually the one that’s holding his arm to stop him hurting
himself and doing cycle kicks with his legs and he’s quite relaxed ‘cos he knows that mum knows
how to do that”
1
16
40(4f6); environments
“yeah I suppose you could see her at, I don’t know, outside in a playground or something or you
know, go to the park”
3
1
“obviously she chats while (child’s) playing and we’re chatting at the same time so you get to learn about a person”
3
15
2
9b(2m1); meaning and context for parent, early stages
“… well it’s a bit distressing because you know that you’re trying to do the best for her but she has
no comprehension of that, all she knows is right now I don’t want to do this. And it may be that it’s
because she’s had a growth spurt and she’s particularly stiff and you’re trying to loosen this off to help her”
4
24(1f2); readiness
“But I guess I just took it on because when I first used it I couldn’t believe what a good impact it had”
4a(1f2); confidence
“always smiling whilst you’re doing physio, he loves it, its play to him, it’s not you know working.
So that was the start of it and yeah pretty much then his whole body opened up and you know, he
was a different child”
2
6
26a (2m1); teacher/expert
“what I’m being told that’s the best you can do really. Don’t force it, work with them, which is fine.
But you’ve still got an element of you know, I’m not a physio. I’m not a professional physiotherapist
or an OT or anything like that so I don’t know all the time”
1
7
38a (4f6); feel good physiotherapy
“ (child) loves going to it and I think if it had been just full of exercises that, you know, someone was
there and she was just doing this, this and this, I think we’d have struggled to keep going”
2
5
28
2
29
Have you experienced a physiotherapist helping you to problem solve any difficulties you had in
learning?
•
Can you tell me where your child received physiotherapy? Are there any of these you feel more able
to learn in?
•
Can you tell me if you manage to fit in physiotherapy into your family life? Have there been times
when this seemed difficult or even impossible? Can you tell me about a time when it was difficult?
Were you able to talk to your physiotherapist about that?
•
Have you experienced different ways of being taught by a physiotherapist?
•
How do you feel you learn best? Can you think of something that you feel you learnt well?
•
What things do you think help your experience of learning physiotherapy?
•
Do you feel there are things that can get in the way of your learning?
•
Are there times when learning physiotherapy has been easier for you?
•
Can you summarize your experiences of learning physiotherapy?
8
4d (1f2); support intensity
“when I look back. At the time I didn’t really know why. I thought you know I’m just not very good at all
of this, you know and that sort of thing, but. You know you look back now and you think that’s why, that’s why.
And you know, now, I don’t want to blow my own trumpet but you do you just do things now and you don’t
think anything of it “
1
9
25( 2m1); anatomy and meaning
“And because you don’t know what they’ve just felt to know where to stop, you don’t know whether
you’ve right have I gone too far or not far enough? “
2
10
41a(1f2); later experience
“if someone told me when I first moved in with my fella that I’d have to learn how to use an automatic
washing machine, I was like you’re having a laugh. I shrunk everything, it got stretched. Bless his
heart if you look at (child) as a washing machine, you know, now you do that with your eyes closed
but it comes with experience, the more I’ve worked with him the more confident I guess I became an
I’m you know, obviously (child) became more confident with me”
2
11
10(3f3); external support networks
“So it was actually really helpful to have someone who was like, no, you know, you just have to keep
working on things and help him, etc., essentially. If it is what it is, that you could do something about it,
which was quite helpful”
1
12
12a(4f6); life external to therapy
“I don’t want her disability ever to hold her back. I’d like her to try everything and if it doesn’t work,
okay let’s go and have a look at something else. I mean we’re looking at taking her skiing and I’ve been
looking at all of that for her”
1
Major
Theme number
•
13
56(3f3); I believe in physiotherapy
“(friend) was gutted because this was a little girl the same age as her daughter who she saw in clinic,
same diagnosis, cerebral palsy spastic diplegic and mother wouldn’t do anything, never bothered.
It’s awful, it’s really shocking”
2
1
14
14(1f2); being able
“where I just had no oomph to do it and the guilt you feel when you do that is just unreal.”
11a(5f7)
3
Emergent
Theme number
Appendix 2 – Quotes to represent the formulation of the themes
1
Quotation (coded, verbatim) examples
21b (2m1); relationships and roles
“And it’s not a case of oh we’re going to do this now. You’re constantly looking and just observing
what your child is doing”
4c(5f7)
“You feel out of your comfort zone I think as a parent. Because all of a sudden you’re having to rely
on someone coming in to do something for your child that you can’t do. And I think in the beginning
that can be quite upsetting, because as a parent you want to be able to do everything for your child
and all of a sudden once they’ve been diagnosed with additional needs, you’re out of your comfort
zone you can’t do it. So you’re quite reliant on people, particularly physios”
2
9b(Parent 4f6); early relationships
“it’s a struggle. Because we’ve got the other children you know, it’s not just (child)that we can
devote our time to”
5 (3f3); meaning and context for both parent and child
“He couldn’t go up and down stairs, you know, teaching him how to go up and down stairs, how to do
things. She had a fun way of making everything so he didn’t know he was working, he was just having fun”
42(1f2); becoming expert
“mean I roll (child) onto his side and I’m actually the one that’s holding his arm to stop him hurting
himself and doing cycle kicks with his legs and he’s quite relaxed ‘cos he knows that mum knows
how to do that”
1
16
40(4f6); environments
“yeah I suppose you could see her at, I don’t know, outside in a playground or something or you
know, go to the park”
3
1
“obviously she chats while (child’s) playing and we’re chatting at the same time so you get to learn about a person”
3
15
2
9b(2m1); meaning and context for parent, early stages
“… well it’s a bit distressing because you know that you’re trying to do the best for her but she has
no comprehension of that, all she knows is right now I don’t want to do this. And it may be that it’s
because she’s had a growth spurt and she’s particularly stiff and you’re trying to loosen this off to help her”
4
24(1f2); readiness
“But I guess I just took it on because when I first used it I couldn’t believe what a good impact it had”
4a(1f2); confidence
“always smiling whilst you’re doing physio, he loves it, its play to him, it’s not you know working.
So that was the start of it and yeah pretty much then his whole body opened up and you know, he
was a different child”
2
6
26a (2m1); teacher/expert
“what I’m being told that’s the best you can do really. Don’t force it, work with them, which is fine.
But you’ve still got an element of you know, I’m not a physio. I’m not a professional physiotherapist
or an OT or anything like that so I don’t know all the time”
1
7
38a (4f6); feel good physiotherapy
“ (child) loves going to it and I think if it had been just full of exercises that, you know, someone was
there and she was just doing this, this and this, I think we’d have struggled to keep going”
2
5
28
2
29
Children with Cerebral Palsy: Perspectives and Experiences of Using Standing Frames
Susan Hughes BSc (Hons) MSc [a*], Lorna Campbell BSc MSc FHEA [b]
[a] Senior Physiotherapy, Health Service Executive, Ireland
[b] , Senior Lecturer, Sheffield Hallum University
*Corresponding author: email: Susan.Hughes@hse.ie
________________________________________________________________________________
ABSTRACT
Background and Purpose
It is common practice for physiotherapists to use standing frames to manage the physical problems of
children with cerebral palsy (CP) as part of their therapy programmes. Gaining an insight on children’s
perspectives on using standing frames and the impact on their lives could provide knowledge to support
physiotherapists in ensuring their practice is centred on the best interests of children.
The aim of this study was to explore the experiences and perspectives of children with CP, of using standing
frames and to identify if there were any personal attributes or environmental characteristics which influence
the experience of using a standing frame.
Method
Six children (8-17 years old) from four counties in North East Ireland participated in semi-structured
interviews.
Results
Thematic analysis (Braun and Clarke, 2006) identified five themes: ‘Something among the ordinary’, ‘Standing
among the crowd’, ‘Something that has to be done’, ‘Comfortable but not always’ and ‘Advice for others’.
Heterogeneity exists in the experience of using a standing frame including variation with age, GMFCS E & R
level (Palisano et al, 2007), how it can be fitted into a person’s daily life, and on the level of acceptance of the
person’s needs by others.
Conclusion
This study suggests that consideration should be given to all concepts related to a child’s life and
development when introducing a standing frame. No standing frame assessment, which includes concepts
related to anything other than body structure and function appears to exist. Development of an assessment
that includes issues identified could be indicated.
________________________________________________________________________________________________
Introduction
It is common practice for physiotherapists to assist
children with CP to stand as part of their therapy
programme (Gough, 2009). This can be done in
various ways but routinely, devices known as
standing supports or standing frames are employed
to help children achieve an appropriate standing
posture (Wintergold et al, 2008; Bush et al, 2010).
Children with CP experience varying levels of
limitation in the development of movement and
postural control. They present with varying degrees
of abnormal postures, poor motor performance, and
progressive muscle, joint and bone deformity as
they grow (Lin, 2004). Hence, physiotherapists cite
reasons for using standing frames such as
improving or changing a child’s functional position,
improving and maintaining muscle length and bone
30
density, promoting hip development and social
interaction, physiological effects on bladder, bowel
or respiratory system (Wintergold et al, 2008; Bush
and Biggs, 2011). These reasons fall in line with
established principles for managing the motor
problems of children with CP although
physiotherapists acknowledge there is limited
research evidence available to support them
(Damiano, 2004; Bush and Biggs, 2011).
When planning clinical interventions, Rosenbaum
and Gorter (2012) encourage us to think about six
‘F-words’ within the International Classification of
Functioning (ICF) framework (WHO 2001). This is
to remind us of what is important in the
development of all children: fitness, function,
friendships, fun, family and overall well-being in
the future. Whilst the importance of intervention
S. Hughes et al / APCP Journal Volume 5 Number 1 (2014) 30-37
aimed at improving or maintaining body structure
and function is acknowledged, consideration should
be given to how physiotherapy treatments could
affect function, friendships, fun, family and future
wellbeing (Rosenbaum and Gorter, 2012). Bush and
Biggs (2011) interviewed 7 children with CP from
the UK to explore their experience of assisted
standing. The authors reported that their data
suggested using a standing frame was something
the children had to tolerate as part of their daily
routine. The children reported feelings of isolation,
pain, activity limitation and participation restriction.
It also emerged that the children wanted more
control over when and where they used their
standing frame in school. The children also wanted
changes to the frame they were using such as the
provision of electronic controls and being easier to
get in and out. This study aimed to obtain the
insider perspective of Irish children and to
encompass some factors not addressed by Bush and
Biggs (2011), namely the inclusion of home use and
whether perspectives and experiences changed with
age.
In summary, the aims of the study were to:
• explore and document the experiences and
perspectives of children with CP of using
standing frames;
• gain an understanding of how the lives of
children with CP are impacted by using standing
frames;
• identify if there are personal attributes or
environmental characteristics which influence
the experience of using a standing frame such as:
where the standing frame is used (home, school);
age of the child; and severity of disability as per
GMFCS E & R level (Palisano et al, 2007).
Method
Qualitative methodology was used to explore the
experiences and perspectives of children who use
standing frames. The approach used is rooted in the
descriptive phenomenological tradition which seeks
to describe the shared experience amongst
individuals.
Participant
Type of school
attended
Gender
IQ
GMFCS E & R Level
Current Frame Location
Interview Site
Interviewed alone or
with parent?
Recruitment of Participants
Six out of fourteen potential participants from four
counties in North East Ireland agreed to take part.
The participants ranged in age from 8 to 17 years
(Table 1).
Participants’ age has not been presented in order to
maintain their anonymity but the type of school they
attended is included to give an idea of age range.
Data saturation did not occur. Ethical approval was
obtained from the Health Service Executive and
Sheffield Hallam University.
Inclusion Criteria
• children age 5-18 years who have a diagnosis
of CP
• children who use a standing frame at home or
at school
• children who have a reliable method
of communication
The school-age range was selected as data regarding
the children’s perspectives could be collected at
different developmental stages. Also, children who
are school goers may use a standing frame at home
and/or at school and this would facilitate data
collection on using a standing frame in both
environments.
Exclusion Criteria
children whose IQ fell below the mild intellectual
impairment range (IQ<50)
These children were excluded as they were likely to
have receptive and expressive language difficulties
that would make it difficult for them to understand
and answer the questions posed.
Data Collection
Face-to-face interviews were conducted with the six
participants using a semi-structured interview topic
guide and were recorded with a digital audio
recorder. Written consent was sought from the
parent(s) of all participants and verbal or written
assent was sought from each child, depending on
their hand function. The child’s assent was sought in
the presence of their parent(s) and documented on
A
Mainstream
primary
F
Average range
II
Home & school
Home
B
Mainstream
primary
M
Average range
III
Home & school
Home
C
Mainstream
primary
M
Average range
V
Home & school
Home
D
Mainstream
primary
M
Average range
IV
Home
Local health centre
E
Mainstream
secondary
M
Average range
IV
Home & school
Home
F
Mainstream
secondary
F
Average range
III
Home
Home
With parent
With parent
With parent
Alone
With parent
Alone
Table 1 – Participants’ demograhics
31
Children with Cerebral Palsy: Perspectives and Experiences of Using Standing Frames
Susan Hughes BSc (Hons) MSc [a*], Lorna Campbell BSc MSc FHEA [b]
[a] Senior Physiotherapy, Health Service Executive, Ireland
[b] , Senior Lecturer, Sheffield Hallum University
*Corresponding author: email: Susan.Hughes@hse.ie
________________________________________________________________________________
ABSTRACT
Background and Purpose
It is common practice for physiotherapists to use standing frames to manage the physical problems of
children with cerebral palsy (CP) as part of their therapy programmes. Gaining an insight on children’s
perspectives on using standing frames and the impact on their lives could provide knowledge to support
physiotherapists in ensuring their practice is centred on the best interests of children.
The aim of this study was to explore the experiences and perspectives of children with CP, of using standing
frames and to identify if there were any personal attributes or environmental characteristics which influence
the experience of using a standing frame.
Method
Six children (8-17 years old) from four counties in North East Ireland participated in semi-structured
interviews.
Results
Thematic analysis (Braun and Clarke, 2006) identified five themes: ‘Something among the ordinary’, ‘Standing
among the crowd’, ‘Something that has to be done’, ‘Comfortable but not always’ and ‘Advice for others’.
Heterogeneity exists in the experience of using a standing frame including variation with age, GMFCS E & R
level (Palisano et al, 2007), how it can be fitted into a person’s daily life, and on the level of acceptance of the
person’s needs by others.
Conclusion
This study suggests that consideration should be given to all concepts related to a child’s life and
development when introducing a standing frame. No standing frame assessment, which includes concepts
related to anything other than body structure and function appears to exist. Development of an assessment
that includes issues identified could be indicated.
________________________________________________________________________________________________
Introduction
It is common practice for physiotherapists to assist
children with CP to stand as part of their therapy
programme (Gough, 2009). This can be done in
various ways but routinely, devices known as
standing supports or standing frames are employed
to help children achieve an appropriate standing
posture (Wintergold et al, 2008; Bush et al, 2010).
Children with CP experience varying levels of
limitation in the development of movement and
postural control. They present with varying degrees
of abnormal postures, poor motor performance, and
progressive muscle, joint and bone deformity as
they grow (Lin, 2004). Hence, physiotherapists cite
reasons for using standing frames such as
improving or changing a child’s functional position,
improving and maintaining muscle length and bone
30
density, promoting hip development and social
interaction, physiological effects on bladder, bowel
or respiratory system (Wintergold et al, 2008; Bush
and Biggs, 2011). These reasons fall in line with
established principles for managing the motor
problems of children with CP although
physiotherapists acknowledge there is limited
research evidence available to support them
(Damiano, 2004; Bush and Biggs, 2011).
When planning clinical interventions, Rosenbaum
and Gorter (2012) encourage us to think about six
‘F-words’ within the International Classification of
Functioning (ICF) framework (WHO 2001). This is
to remind us of what is important in the
development of all children: fitness, function,
friendships, fun, family and overall well-being in
the future. Whilst the importance of intervention
aimed at improving or maintaining body structure
and function is acknowledged, consideration should
be given to how physiotherapy treatments could
affect function, friendships, fun, family and future
wellbeing (Rosenbaum and Gorter, 2012). Bush and
Biggs (2011) interviewed 7 children with CP from
the UK to explore their experience of assisted
standing. The authors reported that their data
suggested using a standing frame was something
the children had to tolerate as part of their daily
routine. The children reported feelings of isolation,
pain, activity limitation and participation restriction.
It also emerged that the children wanted more
control over when and where they used their
standing frame in school. The children also wanted
changes to the frame they were using such as the
provision of electronic controls and being easier to
get in and out. This study aimed to obtain the
insider perspective of Irish children and to
encompass some factors not addressed by Bush and
Biggs (2011), namely the inclusion of home use and
whether perspectives and experiences changed with
age.
In summary, the aims of the study were to:
• explore and document the experiences and
perspectives of children with CP of using
standing frames;
• gain an understanding of how the lives of
children with CP are impacted by using standing
frames;
• identify if there are personal attributes or
environmental characteristics which influence
the experience of using a standing frame such as:
where the standing frame is used (home, school);
age of the child; and severity of disability as per
GMFCS E & R level (Palisano et al, 2007).
Method
Qualitative methodology was used to explore the
experiences and perspectives of children who use
standing frames. The approach used is rooted in the
descriptive phenomenological tradition which seeks
to describe the shared experience amongst
individuals.
Participant
Type of school
attended
Gender
IQ
GMFCS E & R Level
Current Frame Location
Interview Site
Interviewed alone or
with parent?
Recruitment of Participants
Six out of fourteen potential participants from four
counties in North East Ireland agreed to take part.
The participants ranged in age from 8 to 17 years
(Table 1).
Participants’ age has not been presented in order to
maintain their anonymity but the type of school they
attended is included to give an idea of age range.
Data saturation did not occur. Ethical approval was
obtained from the Health Service Executive and
Sheffield Hallam University.
Inclusion Criteria
• children age 5-18 years who have a diagnosis
of CP
• children who use a standing frame at home or
at school
• children who have a reliable method
of communication
The school-age range was selected as data regarding
the children’s perspectives could be collected at
different developmental stages. Also, children who
are school goers may use a standing frame at home
and/or at school and this would facilitate data
collection on using a standing frame in both
environments.
Exclusion Criteria
children whose IQ fell below the mild intellectual
impairment range (IQ<50)
These children were excluded as they were likely to
have receptive and expressive language difficulties
that would make it difficult for them to understand
and answer the questions posed.
Data Collection
Face-to-face interviews were conducted with the six
participants using a semi-structured interview topic
guide and were recorded with a digital audio
recorder. Written consent was sought from the
parent(s) of all participants and verbal or written
assent was sought from each child, depending on
their hand function. The child’s assent was sought in
the presence of their parent(s) and documented on
A
Mainstream
primary
F
Average range
II
Home & school
Home
B
Mainstream
primary
M
Average range
III
Home & school
Home
C
Mainstream
primary
M
Average range
V
Home & school
Home
D
Mainstream
primary
M
Average range
IV
Home
Local health centre
E
Mainstream
secondary
M
Average range
IV
Home & school
Home
F
Mainstream
secondary
F
Average range
III
Home
Home
With parent
With parent
With parent
Alone
With parent
Alone
Table 1 – Participants’ demograhics
31
the same consent form as the parent’s consent.
Interviews were conducted at a time, day and venue
of the parents’ and children’s choice. Components
of Practical Pragmatics, Prag6 (Rippon, 2006) and
Emotions/Facial Expressions, Prag1 (Rippon, 2010)
were brought to each interview to support
children’s conversation and descriptions if
necessary so that children could find words which
fitted their own ideas and not the researcher’s ideas.
It was not necessary to use these as all participants
were competent verbal communicators. To ensure
ongoing assent during the interviews, the children
had access to a ‘pass’ (orange) card to use if they did
not want to answer a question and a ‘stop’ (red)
card to indicate if they wanted to end the interview
(Wiles et al, 2004). All children were happy to
complete the interview process. The parent and
Phase
child decided whether the parent was present for
the interview. Parents were aware that the aim of
the study was to investigate children’s perspectives
and did not interject except on one occasion where it
resulted in the participant giving more information.
Data Analysis
The data was analysed by the author using Braun
and Clarke’s (2006) 6-phase guide to thematic
analysis (Table 2).
Brief summary of actions
Data was coded inductively through line-by-line analysis of the
transcripts. This was done by typing comments in the margins of
the transcripts and highlighting data which was coded the same in
each transcript. Some data was coded more than once in order to
help identify as many potential themes as possible. Data extracts
for each code were collated.
3. Searching for themes
Codes were sorted into potential themes by using tables - all the
coded extracts were collated for each potential theme. Relationships
between codes and potential themes were considered and the
amount of data to support each potential theme was visible.
4. Reviewing themes
Where data seemed to come together meaningfully and form a
coherent pattern, themes were combined. One potential theme was
discarded as there was not enough data to support it. Transcripts
were re-read to consider how the refined themes worked for the
data set and to find data previously coded differently which needed
to be included within the refined themes.
5. Defining and naming themes
6. Producing the report
Results
Three of the participants were known to the
interviewer. In order to reduce bias, the interviewer
made it clear to the participants that the study was
separate to their regular physiotherapy and they
should say what they really felt about their standing
frame. It was made clear that their comments
would not affect their treatment.
1. Familiarising yourself with the data Recordings were transcribed verbatim. Transcripts were checked
back against the recordings to ensure accuracy. The entire data
set was read repeatedly to increase familiarity with it.
2. Generating initial codes
Each theme was defined and given a name which reflected its
essence. The five themes generated are a reflection of the entire data
set which is fitting for investigating an under researched area.
A selection of extracts was embedded in an analytic narrative,
relating back to the research question.
Figure 1 – Final thematic map
said and if they wished to add or change anything.
To ensure that corrections or additions were
representative of the child’s view, a prompt sheet for
their feedback was sent. The child was asked to
write their own response if able; otherwise, the
parent was asked to accurately write down the
child’s response being mindful that the aim of the
study was to gather children’s perspectives. Four
participants returned the prompt sheet indicating
they were happy with the content of the transcript.
They did not add any new information or indicate
they wanted to change anything said.
This theme is defined by how using the standing
frame affects children’s activities and their
participation in home and school life.
All participants reported taking part in typical
activities of childhood and adolescence while in the
standing frame such as watching TV, chatting,
playing computer games and doing school and
homework.
32
The participants were sent a copy of the interview to
read or for parents to read to them. They were
asked if it was a fair representation of what they
B: Because I play my Playstation and mum said I could
do it in my frame as well but I just don’t like staying in
that and I have to stay in it for long. I actually like my
stander sometimes but at home I would be like, no, I just
want to play the Playstation.
Children C and D (GMFCS E & R levels V and IV
respectively) seemed happier to use the standing
frame at home than children A and B. They
reported no difficulty with doing their typical home
activities in their frames and reported they could do
things as well in standing as they could in sitting.
I: And what do you do at school when you are in your
standing frame?
Further, children C and D gave anecdotes, which
provide evidence to suggest that being in the
standing frame at home enhances their interactions
and relationships with family members and visitors
to their homes. Also, standing appeared to give
these children a sense of enhanced well-being.
C: Writing, I do my tests, I do my typing. I do pretty
normal stuff.
I: Does it help the way you play with the other people in
the house?
I: What about if you were at home?
Table 2 - 6-Phase Guide to Conducting Thematic Analysis (Braun and Clarke, 2006)
considering the ways the broader social context
affects those meanings. In this study, the broader
social context includes how school life, information
from therapist and influence of friends and family
influence participant meanings.
I: Can you say why you don’t want to do it at home?
Something among the ordinary
C: I play my video games or I’d watch TV, listen to
music.
This method was chosen as it reports experiences,
meaning and the reality of participants (Braun and
Clarke, 2006). It is not tied to a particular theoretical
framework so the data was analysed from a
contextualist perspective. Braun and Clarke (2006)
describe this as sitting between essentialism and
constructionism. The objective was to report the
reality and experiences of participants and the
meanings they attach to them along with
children A and B (GMFCS E & R levels II and III
respectively), it was clearly something they did as
part of the school day and although they could play
games in the frame while at home, they wanted to
be free to relax and move as they pleased once they
were outside the confines of the school routine.
The primary school-aged children who currently
use a frame at school (A, B, C) reported that they
did their academic work whilst in the standing
frame without difficulty. Being in the standing
frame at school had no positive or negative effects
on their interactions with others in the classroom, as
they all used the standing frame during work time.
The children who attend primary school were
divided regarding home use (A, B, C, D). For
C: Yeah
I: How does it do that?
C: When they’re standing, it’s like I am standing too.
And I can do the stuff that they’re doing.
I: How does that feel to you?
C: It makes me feel really happy.
I: Did any of your other friends or your sister say
anything about your standing frame?
D: …and my friends just love to see who is taller, me or
33
the same consent form as the parent’s consent.
Interviews were conducted at a time, day and venue
of the parents’ and children’s choice. Components
of Practical Pragmatics, Prag6 (Rippon, 2006) and
Emotions/Facial Expressions, Prag1 (Rippon, 2010)
were brought to each interview to support
children’s conversation and descriptions if
necessary so that children could find words which
fitted their own ideas and not the researcher’s ideas.
It was not necessary to use these as all participants
were competent verbal communicators. To ensure
ongoing assent during the interviews, the children
had access to a ‘pass’ (orange) card to use if they did
not want to answer a question and a ‘stop’ (red)
card to indicate if they wanted to end the interview
(Wiles et al, 2004). All children were happy to
complete the interview process. The parent and
Phase
child decided whether the parent was present for
the interview. Parents were aware that the aim of
the study was to investigate children’s perspectives
and did not interject except on one occasion where it
resulted in the participant giving more information.
Data Analysis
The data was analysed by the author using Braun
and Clarke’s (2006) 6-phase guide to thematic
analysis (Table 2).
Brief summary of actions
Data was coded inductively through line-by-line analysis of the
transcripts. This was done by typing comments in the margins of
the transcripts and highlighting data which was coded the same in
each transcript. Some data was coded more than once in order to
help identify as many potential themes as possible. Data extracts
for each code were collated.
3. Searching for themes
Codes were sorted into potential themes by using tables - all the
coded extracts were collated for each potential theme. Relationships
between codes and potential themes were considered and the
amount of data to support each potential theme was visible.
4. Reviewing themes
Where data seemed to come together meaningfully and form a
coherent pattern, themes were combined. One potential theme was
discarded as there was not enough data to support it. Transcripts
were re-read to consider how the refined themes worked for the
data set and to find data previously coded differently which needed
to be included within the refined themes.
5. Defining and naming themes
6. Producing the report
Results
Three of the participants were known to the
interviewer. In order to reduce bias, the interviewer
made it clear to the participants that the study was
separate to their regular physiotherapy and they
should say what they really felt about their standing
frame. It was made clear that their comments
would not affect their treatment.
1. Familiarising yourself with the data Recordings were transcribed verbatim. Transcripts were checked
back against the recordings to ensure accuracy. The entire data
set was read repeatedly to increase familiarity with it.
2. Generating initial codes
Each theme was defined and given a name which reflected its
essence. The five themes generated are a reflection of the entire data
set which is fitting for investigating an under researched area.
A selection of extracts was embedded in an analytic narrative,
relating back to the research question.
Figure 1 – Final thematic map
said and if they wished to add or change anything.
To ensure that corrections or additions were
representative of the child’s view, a prompt sheet for
their feedback was sent. The child was asked to
write their own response if able; otherwise, the
parent was asked to accurately write down the
child’s response being mindful that the aim of the
study was to gather children’s perspectives. Four
participants returned the prompt sheet indicating
they were happy with the content of the transcript.
They did not add any new information or indicate
they wanted to change anything said.
This theme is defined by how using the standing
frame affects children’s activities and their
participation in home and school life.
All participants reported taking part in typical
activities of childhood and adolescence while in the
standing frame such as watching TV, chatting,
playing computer games and doing school and
homework.
32
The participants were sent a copy of the interview to
read or for parents to read to them. They were
asked if it was a fair representation of what they
B: Because I play my Playstation and mum said I could
do it in my frame as well but I just don’t like staying in
that and I have to stay in it for long. I actually like my
stander sometimes but at home I would be like, no, I just
want to play the Playstation.
Children C and D (GMFCS E & R levels V and IV
respectively) seemed happier to use the standing
frame at home than children A and B. They
reported no difficulty with doing their typical home
activities in their frames and reported they could do
things as well in standing as they could in sitting.
I: And what do you do at school when you are in your
standing frame?
Further, children C and D gave anecdotes, which
provide evidence to suggest that being in the
standing frame at home enhances their interactions
and relationships with family members and visitors
to their homes. Also, standing appeared to give
these children a sense of enhanced well-being.
C: Writing, I do my tests, I do my typing. I do pretty
normal stuff.
I: Does it help the way you play with the other people in
the house?
I: What about if you were at home?
Table 2 - 6-Phase Guide to Conducting Thematic Analysis (Braun and Clarke, 2006)
considering the ways the broader social context
affects those meanings. In this study, the broader
social context includes how school life, information
from therapist and influence of friends and family
influence participant meanings.
I: Can you say why you don’t want to do it at home?
Something among the ordinary
C: I play my video games or I’d watch TV, listen to
music.
This method was chosen as it reports experiences,
meaning and the reality of participants (Braun and
Clarke, 2006). It is not tied to a particular theoretical
framework so the data was analysed from a
contextualist perspective. Braun and Clarke (2006)
describe this as sitting between essentialism and
constructionism. The objective was to report the
reality and experiences of participants and the
meanings they attach to them along with
children A and B (GMFCS E & R levels II and III
respectively), it was clearly something they did as
part of the school day and although they could play
games in the frame while at home, they wanted to
be free to relax and move as they pleased once they
were outside the confines of the school routine.
The primary school-aged children who currently
use a frame at school (A, B, C) reported that they
did their academic work whilst in the standing
frame without difficulty. Being in the standing
frame at school had no positive or negative effects
on their interactions with others in the classroom, as
they all used the standing frame during work time.
The children who attend primary school were
divided regarding home use (A, B, C, D). For
C: Yeah
I: How does it do that?
C: When they’re standing, it’s like I am standing too.
And I can do the stuff that they’re doing.
I: How does that feel to you?
C: It makes me feel really happy.
I: Did any of your other friends or your sister say
anything about your standing frame?
D: …and my friends just love to see who is taller, me or
33
them. They stand up beside me and one of my friends
cheated, she went on her tippy toes. I said that’s not fair,
if I went on my tippy toes I’d still be taller than you.
The above data suggests that children who are less
physically able and unable to stand independently
(GMFCS E & R IV-V) are more amenable and
content with using a standing frame at home than
those who have more options for independent
movement and standing (GMFCS E & R II-III). The
data suggests this is because being in the standing
frame at home can augment interpersonal
interactions and sense of well-being as well as
providing the required postural support to allow
function for those at GMFCS E & R levels IV and V.
There is a difference in how standing frames are
used by the teenagers versus the younger children.
Teenager F reported that she did her homework
whilst in her standing frame. She felt she could fit
using the standing frame into her evening without
her free-time being affected. She did not use a
standing frame during the school day, as she had to
change classroom frequently.
Teenager E reported preferring to use the standing
frame at school rather than at home. This was
because he used it in an unoccupied classroom
when he had a free space on his timetable and did
not have to do any activity in it, apart from chatting.
At home, the main activity he did in the standing
frame was playing a computer game. He found his
hand function and concentration were not as good
when he was in the standing frame as compared to
sitting and this negatively affected his ability to play
his computer game. This data draws attention to
the need to ensure that users can partake properly
in activities that are meaningful to them whilst in
their standing frame.
standing frame in home and school environments.
It seemed that other children did not tend to ask the
children about their use of the frame. Those who
reported they had been asked questions were
comfortable with answering about the piece of
equipment and why they used it.
I: Do they ever ask you any questions about it?
B: No. Well a boy called [blank] does cause he wants to
know about my chairs and all that.
I: And how did you feel when he asked you about that?
All except the youngest child displayed an
understanding of why they were using them. This
may be due to the level of understanding of an 8
year old and this is backed up by the recollections of
the eldest participant.
F: ……and I suppose like now it’s easier using it but
when I was small now because I didn’t understand, I’d be
in it for about a minute and I’d be dying to get out. I
used to kind of hate doing it but like I know now it’s kind
of for my own good. Back then I didn’t have a clue why I
was doing this. Why I was in it or whatever.
experiencing discomfort is likely at some point,
especially in the early stages of use.
All interviewees reported that their standing frames
were relatively comfortable to use. All also gave
accounts of discomfort from the present or past
surrounding use of the frame. Some of the
difficulties described were itchy legs, red knees and
pins and needles. The participants seemed to view
these difficulties as relatively insignificant and not
something that would make them stop standing in
the frame.
B: Not a bother. I just answered the questions that he said.
For the majority using the standing frame in the
presence of others was without lasting
psychological impact and something they were
happy to continue with.
I: Does it make you feel any different to your sister or
friends?
D: No not at all. My sister she still thinks of me as plain
old annoying [blank]. And to them I’m still [blank], I’m
still the same boy. It’s nothing different to me, just
standing in the stander.
However, one participant recalled how when she
used the standing frame at primary school, she did
feel different to the others in the classroom and this
feeling was enhanced if someone unknown entered
the class while she was in it. This was despite the
acceptance of her classmates of the frame.
F: In ways it didn’t bother me in school but in other ways
it did cause you were in the stander. You were still
talking to people but you were still kind of standing out
to other people. Say if someone new came into the class,
they’d be looking at you like.
There is an indication that age/life stage may
influence how young people use standing frames in
their daily lives. The need for standing programmes
to be re-evaluated as children grow and mature is
highlighted.
One other did mention if he was seen by unknown
others in the frame, they might think he was
“weird”. Despite this he said he was agreeable to
continuing to use the frame in his classroom at
school.
Standing among the crowd
Something that has to be done
The essence of this theme is the general acceptance
by others of the children’s use of standing frames
and how the majority of participants did not see
themselves as different because of using it.
This theme is defined by the sense that using the
standing frame is something that has to be done.
There was a feeling portrayed in the data that it was
something you had to use if you wanted to maintain
current physical status and progress it.
The participants all felt that their families and
classmates accepted that they used a standing frame
and reported this from home and school life.
Although not everyone was currently using a
standing frame in dual environments, all
participants had some past experience of using a
F: Well there’s kinda like two options. If you don’t use it
you’re not going to get any better like and if you do use
it, I know it is a bit of a pain but like everything else you
have to use it. I know if I don’t use it I’m not going to get
anywhere like. I’m not going to get any better like.
34
A lack of understanding may also be part of the
reason why the youngest participant is reluctant to
use the standing frame at home.
The five older participants all gave reasons related
to maintaining and improving physical functioning
(strengthening, stretching, postural alignment,
avoid pain) for using a standing frame. The
participants felt current use would aid them with
activities in the future and with avoiding future
regret. This may be why they portrayed it was
important to continue to stand despite some days
feeling like they did not want to use the frame.
I: If say someone was starting to use a standing frame,
what would you tell them about it?
B: Em I’d give them all the information and I’d say that
it’s really good. Don’t turn around someday and say that
you don’t like it cause it will help you eventually if you
keep doing it.
Another aspect to this theme is that participants
reported a lack of choice about whether they used
the frame or not, especially at school. They
described more control over home use. The
participants were not bothered by the lack of choice
surrounding school use. This seemed to be because
of their beliefs that using the standing frame would
help them and because it was part of the school
routine which they had to conform to. Even those
who reported feelings of difference from others felt
using a standing frame in school was important to
meet their own physical needs.
I: Do you think you should keep using it?
C: Yeah
I: Why do you think that?
C: It just helps me. And I don’t care what people think
either cause it helps me. That’s all that matters.
Comfortable but not always
The basis of this theme is that using a standing
frame can be a comfortable experience but that
Two participants recounted stronger feelings of
annoyance and upset about knee pain they had
experienced in the frame in the past. The pain had
been resolved by equipment change/alteration and
both were now agreeable to continued use of their
frames. There was consensus that with regular use
of the frame and with time, being in it became
generally more comfortable.
Advice for others
The contributors, apart from the youngest, were
able to provide advice for other standing frame
users and information with implications for
professional practice:
• experiencing some soreness can be expected
until one becomes accustomed to using the
frame;
• the therapist should ensure the user is
comfortable in the frame and avoid causing pain;
• the therapist should consult with the child
directly about how they feel about using a
standing frame;
• regular use is important to avoid getting stiff and
uncomfortable in the frame;
• inclusion of a back massaging facility within the
frame would help musculoskeletal pain (not
caused by standing frame);
• headrests should be made of material which is
shock absorbing to avoid pain if the user’s head
moves back suddenly or if the user has
uncontrolled head movement;
• for those who are able, straps which could be
fastened without the help of another would
facilitate independent use of a standing frame;
• continued use will help with meeting goals
regarding physical progress and avoiding regret
in the future.
The majority of the advice given by the participants
is focussed on improving the physical experience of
using a standing frame. The children’s priority
appeared to be about comfort and having any
problems surrounding comfort resolved. The
children did not suggest changes related to the
35
them. They stand up beside me and one of my friends
cheated, she went on her tippy toes. I said that’s not fair,
if I went on my tippy toes I’d still be taller than you.
The above data suggests that children who are less
physically able and unable to stand independently
(GMFCS E & R IV-V) are more amenable and
content with using a standing frame at home than
those who have more options for independent
movement and standing (GMFCS E & R II-III). The
data suggests this is because being in the standing
frame at home can augment interpersonal
interactions and sense of well-being as well as
providing the required postural support to allow
function for those at GMFCS E & R levels IV and V.
There is a difference in how standing frames are
used by the teenagers versus the younger children.
Teenager F reported that she did her homework
whilst in her standing frame. She felt she could fit
using the standing frame into her evening without
her free-time being affected. She did not use a
standing frame during the school day, as she had to
change classroom frequently.
Teenager E reported preferring to use the standing
frame at school rather than at home. This was
because he used it in an unoccupied classroom
when he had a free space on his timetable and did
not have to do any activity in it, apart from chatting.
At home, the main activity he did in the standing
frame was playing a computer game. He found his
hand function and concentration were not as good
when he was in the standing frame as compared to
sitting and this negatively affected his ability to play
his computer game. This data draws attention to
the need to ensure that users can partake properly
in activities that are meaningful to them whilst in
their standing frame.
standing frame in home and school environments.
It seemed that other children did not tend to ask the
children about their use of the frame. Those who
reported they had been asked questions were
comfortable with answering about the piece of
equipment and why they used it.
I: Do they ever ask you any questions about it?
B: No. Well a boy called [blank] does cause he wants to
know about my chairs and all that.
I: And how did you feel when he asked you about that?
All except the youngest child displayed an
understanding of why they were using them. This
may be due to the level of understanding of an 8
year old and this is backed up by the recollections of
the eldest participant.
F: ……and I suppose like now it’s easier using it but
when I was small now because I didn’t understand, I’d be
in it for about a minute and I’d be dying to get out. I
used to kind of hate doing it but like I know now it’s kind
of for my own good. Back then I didn’t have a clue why I
was doing this. Why I was in it or whatever.
experiencing discomfort is likely at some point,
especially in the early stages of use.
All interviewees reported that their standing frames
were relatively comfortable to use. All also gave
accounts of discomfort from the present or past
surrounding use of the frame. Some of the
difficulties described were itchy legs, red knees and
pins and needles. The participants seemed to view
these difficulties as relatively insignificant and not
something that would make them stop standing in
the frame.
B: Not a bother. I just answered the questions that he said.
For the majority using the standing frame in the
presence of others was without lasting
psychological impact and something they were
happy to continue with.
I: Does it make you feel any different to your sister or
friends?
D: No not at all. My sister she still thinks of me as plain
old annoying [blank]. And to them I’m still [blank], I’m
still the same boy. It’s nothing different to me, just
standing in the stander.
However, one participant recalled how when she
used the standing frame at primary school, she did
feel different to the others in the classroom and this
feeling was enhanced if someone unknown entered
the class while she was in it. This was despite the
acceptance of her classmates of the frame.
F: In ways it didn’t bother me in school but in other ways
it did cause you were in the stander. You were still
talking to people but you were still kind of standing out
to other people. Say if someone new came into the class,
they’d be looking at you like.
There is an indication that age/life stage may
influence how young people use standing frames in
their daily lives. The need for standing programmes
to be re-evaluated as children grow and mature is
highlighted.
One other did mention if he was seen by unknown
others in the frame, they might think he was
“weird”. Despite this he said he was agreeable to
continuing to use the frame in his classroom at
school.
Standing among the crowd
Something that has to be done
The essence of this theme is the general acceptance
by others of the children’s use of standing frames
and how the majority of participants did not see
themselves as different because of using it.
This theme is defined by the sense that using the
standing frame is something that has to be done.
There was a feeling portrayed in the data that it was
something you had to use if you wanted to maintain
current physical status and progress it.
The participants all felt that their families and
classmates accepted that they used a standing frame
and reported this from home and school life.
Although not everyone was currently using a
standing frame in dual environments, all
participants had some past experience of using a
F: Well there’s kinda like two options. If you don’t use it
you’re not going to get any better like and if you do use
it, I know it is a bit of a pain but like everything else you
have to use it. I know if I don’t use it I’m not going to get
anywhere like. I’m not going to get any better like.
34
A lack of understanding may also be part of the
reason why the youngest participant is reluctant to
use the standing frame at home.
The five older participants all gave reasons related
to maintaining and improving physical functioning
(strengthening, stretching, postural alignment,
avoid pain) for using a standing frame. The
participants felt current use would aid them with
activities in the future and with avoiding future
regret. This may be why they portrayed it was
important to continue to stand despite some days
feeling like they did not want to use the frame.
I: If say someone was starting to use a standing frame,
what would you tell them about it?
B: Em I’d give them all the information and I’d say that
it’s really good. Don’t turn around someday and say that
you don’t like it cause it will help you eventually if you
keep doing it.
Another aspect to this theme is that participants
reported a lack of choice about whether they used
the frame or not, especially at school. They
described more control over home use. The
participants were not bothered by the lack of choice
surrounding school use. This seemed to be because
of their beliefs that using the standing frame would
help them and because it was part of the school
routine which they had to conform to. Even those
who reported feelings of difference from others felt
using a standing frame in school was important to
meet their own physical needs.
I: Do you think you should keep using it?
C: Yeah
I: Why do you think that?
C: It just helps me. And I don’t care what people think
either cause it helps me. That’s all that matters.
Comfortable but not always
The basis of this theme is that using a standing
frame can be a comfortable experience but that
Two participants recounted stronger feelings of
annoyance and upset about knee pain they had
experienced in the frame in the past. The pain had
been resolved by equipment change/alteration and
both were now agreeable to continued use of their
frames. There was consensus that with regular use
of the frame and with time, being in it became
generally more comfortable.
Advice for others
The contributors, apart from the youngest, were
able to provide advice for other standing frame
users and information with implications for
professional practice:
• experiencing some soreness can be expected
until one becomes accustomed to using the
frame;
• the therapist should ensure the user is
comfortable in the frame and avoid causing pain;
• the therapist should consult with the child
directly about how they feel about using a
standing frame;
• regular use is important to avoid getting stiff and
uncomfortable in the frame;
• inclusion of a back massaging facility within the
frame would help musculoskeletal pain (not
caused by standing frame);
• headrests should be made of material which is
shock absorbing to avoid pain if the user’s head
moves back suddenly or if the user has
uncontrolled head movement;
• for those who are able, straps which could be
fastened without the help of another would
facilitate independent use of a standing frame;
• continued use will help with meeting goals
regarding physical progress and avoiding regret
in the future.
The majority of the advice given by the participants
is focussed on improving the physical experience of
using a standing frame. The children’s priority
appeared to be about comfort and having any
problems surrounding comfort resolved. The
children did not suggest changes related to the
35
domains of activity and participation or
environment.
Discussion
It can be seen there is heterogeneity in the
experience of using a standing frame including
variation with age, GMFCS-E & R level, how it can
be fitted into a person’s daily life and on the level of
acceptance of the person’s needs by others. This
demonstrates that use of a standing frame must be
considered on an individual basis.
The participants seemed to accept that using a
standing frame was part of their lives. This can be
likened to the acceptance that they must to go to
school and concurs with the conclusions reached by
Bush and Biggs (2011). How the school day was
structured was an influence on how the participants
used their standing frame. As the standing frame
was used during work time at primary school, it did
not seem to affect social development. This may
have increased its acceptance by the children. At
secondary school level, the data demonstrated it is
more difficult to fit using a standing frame into this
environment. There was a sense that getting
academic work done took precedence over using a
standing frame at school. This may have been
because both teenagers interviewed attended
mainstream secondary schools where the focus is on
preparing for the state examinations.
Mulderij’s (2000) view, that using a standing frame
could be a restriction to play, was supported by one
teenager only. This may have been because of the
way participants used their standing frames at
school and because overall the participants seemed
to have control over standing frame usage at home.
This is positive and means that home activities,
participation and psychosocial development are not
likely to be impeded by standing frame use if
children have this control. Children would benefit
from having choice around standing frame use at
school. The anecdotes regarding home use
provided by the primary school children who are
full-time wheelchair users (GMFCS-E & R level IV
and V) support Strauss’ view as described by
Mulderij (2000), that standing is an important
feature of being human and being in the frame
seemed to give them a sense of body vitality, which
is something children with physical restrictions may
not often feel (Rasmark Hammar et al, 2009).
The participants all gave reasons for standing that
are similar to the reasons given by the
physiotherapists in the Wintergold et al (2008)
study. This leads to the same suggestion from Bush
and Biggs (2011) that children are influenced and
36
accept the reasons given by physiotherapists
regarding use of standing frames. These reasons do
not have much scientific backing but
physiotherapists must consider the potential
physical adverse effects of not introducing a
standing frame (Damiano, 2004; Bush et al, 2010).
There is a reliance on the physiotherapist to have
good clinical reasoning abilities when putting a
standing frame in place especially since the
participants in this study seemed to feel a pressure
to use the standing frame for reasons which appear
to have been related to them by their
physiotherapist. A link between lack of
understanding and reluctance to use a standing
frame was also demonstrated in this study.
Participants were at ease using their standing frame
in the presence of people who knew them and
accepted their extra needs and equipment. Feeling
this comfort and acceptance is crucial for positive
identity formation (Rasmark Hammar et al, 2009).
The data demonstrates that individual feelings may
need to be discussed to ensure those who are selfconscious about being in the standing frame or who
have strong feelings about being different or
“standing out” have their needs addressed
adequately. In late childhood, self-awareness
increases and fitting in with a peer group becomes
increasingly important approaching adolescence
(Carr, 2006). The feelings of difference expressed by
two of the participants, therefore, would not be
unexpected but such feelings need to be addressed
to optimise psychosocial development.
All participants mentioned that they had
experienced some physical discomfort and although
this did not seem to have caused lasting distress,
sorting out problems regarding comfort was
important to them. They may have suggested more
improvements related to this area rather than
activity and participation as they may have had
more or stronger negative experiences related to
comfort than activity and participation. This
demonstrates regular review of the standing frame
directly with the child is important although it is not
within the remit of this study to suggest a timeframe
for this to happen in. Interestingly the children in
this study did not suggest changes to the aesthetics
of the frame, which perhaps indicated they were
satisfied with their frames’ appearances.
Additional research is required to confirm and
explore further the results of this study. The sample
in this study was small and from a specific cultural
context and for that reason, it mainly informs local
practice. Extending sampling beyond the North
East region would have resulted in a stronger
exploration of Irish children’s experiences. The
main limitation of this study is that data was
analysed by only one person. It is hoped this is
compensated for somewhat by providing a clear
account of how the data was analysed. As
participants were asked to validate a copy of their
interview transcript rather than the interpretation of
the data, this was really a process of error reduction
and an opportunity to seek further information
rather than respondent validation (Mays and Pope,
2006). It would have been preferable to send out a
copy of the data interpretation to the participants
instead but unfortunately the project timeframe did
not allow for this. No children with mild
intellectual disability (IQ 50-69) agreed to
participate and the views of those who do not have
a reliable method of communication are not
included. This study adds to wider practice by
demonstrating there is more to standing than
protecting and promoting body structure and
function. It highlights some improvements, which
could add to the comfort and independent use of
standing frames and provides physiotherapists with
information for consideration in their practice.
Conclusion
When utilising a standing frame as part of
physiotherapy for a young person with CP,
consideration should be given by physiotherapists
to all concepts related to a child’s life and
development. No standing frame assessment which
includes concepts related to anything other than
body structure and function appears to exist.
Development of an assessment which includes
concepts and issues identified could be indicated.
Motor Disorders Of Children With Cerebral Palsy: Clinics In
Development Medicine No. 161. 2nd Ed., London, Mac Keith
Press, 161-169.
Gough M (2009). Continuous postural management and
the prevention of deformity in children with cerebral
palsy: an appraisal. Developmental Medicine and Child
Neurology, 51 (2), 105-110.
Lin JP (2004). The assessment and management of
hypertonus in cerebral palsy: a physiological atlas (“road
map”) In: Scrutton D, Damiano D, Mayston M (Eds.)
Management Of The Motor Disorders Of Children With
Cerebral Palsy: Clinics In Development Medicine No. 161. 2nd
Ed., London, Mac Keith Press, 85-104.
Mays N and Pope C (2006). Quality in qualitative health
research. In: Pope C and Mays N (Eds.). Qualitative
Research In Health Care. 3rd Ed., Oxford, Blackwell
Publishing, 82-101.
Mulderij KJ. (2000). Dualistic Notions About Children
With Motor Disabilities: Hands To Lean On Or To Reach
Out? Qualitative Health Research, 10 (1), 39 – 50.
Palisano R, Rosenbaum P, Bartlett D And Livingston M
(2007). GMFCS – E & R Gross Motor Function
Classification System Expanded And Revised. [Online].
Last Accessed 16 December 2013At:
Http://Motorgrowth.Canchild.Ca/En/Gmfcs/Resources
/Gmfcs-Er.Pdf
Rasmark Hammar G, Ozolins A, Idvall E And Rudebeck
Ce (2009). Body Image In Adolescents With Cerebral
Palsy. Journal Of Child Health Care, 13 (1), 19-29.
Rippon H (2006). Practical Pragmatics, Prag6. Keighley,
Black Sheep Press.
Rippon H (2010). Emotions/Facial Expressions, Prag1. 2nd
Ed., Keighley, Black Sheep Press.
References
Braun V and Clarke V (2006). Using thematic analysis In
psychology. Qualitative Research in Psychology, 3 (2), 77-101.
Bush S and Biggs R (2011). Assisted standing –
experiences of children with cerebral palsy and their
physiotherapists. Journal of the Association of Paediatric
Chartered Physiotherapists, 2 (3), 3-10.
Bush S, Daniels N, Caulton J, Davis A, Jex J, Stern G,
William E and Bostock S (2010). Guidance on assisted
standing for children with cerebral palsy. Journal of the
Association of Paediatric Chartered Physiotherapists, 2 (1), 310.
Carr A (2006). The Handbook of Child and Adolescent Clinical
Psychology: A Contextual Approach. 2nd Ed., London,
Routledge.
Damiano D (2004). Physiotherapy management in
cerebral palsy: moving beyond philosophies. In: Scrutton
D, Damiano D, Mayston M (Eds.) Management Of The
Rosenbaum P. And Gorter J.W. (2012). The ‘F-Words’ In
Childhood Disability: I Swear This Is How We Should
Think! Child: Care, Health And Development, 38 (4), 457-463.
Wiles R, Charles V, Crow G And Heath S (2004). Informed
Consent And The Research Process. [Online]. In: Esrc
Research Methods Festival, Oxford, July 2nd 2004. Last
Accessed 16 December 2013 At:
Http://Www.Sociology.Soton.Ac.Uk/Proj/Informed_Co
nsent/Methsfest%20.Rtf
Wintergold A, Pountney T, Cowan D (2008). The Use Of
Standing Supports For Children With Disabilities. Journal
Of The Association Of Paediatric Chartered Physiotherapists,
(126), 13-19.
World Health Organisation (2001) International
Classification Of Functioning, Disability And Health (Icf).
[Online]. Last Accessed 16 December 2013 At:
Http://Www.Who.Int/Classifications/Icf/
37
domains of activity and participation or
environment.
Discussion
It can be seen there is heterogeneity in the
experience of using a standing frame including
variation with age, GMFCS-E & R level, how it can
be fitted into a person’s daily life and on the level of
acceptance of the person’s needs by others. This
demonstrates that use of a standing frame must be
considered on an individual basis.
The participants seemed to accept that using a
standing frame was part of their lives. This can be
likened to the acceptance that they must to go to
school and concurs with the conclusions reached by
Bush and Biggs (2011). How the school day was
structured was an influence on how the participants
used their standing frame. As the standing frame
was used during work time at primary school, it did
not seem to affect social development. This may
have increased its acceptance by the children. At
secondary school level, the data demonstrated it is
more difficult to fit using a standing frame into this
environment. There was a sense that getting
academic work done took precedence over using a
standing frame at school. This may have been
because both teenagers interviewed attended
mainstream secondary schools where the focus is on
preparing for the state examinations.
Mulderij’s (2000) view, that using a standing frame
could be a restriction to play, was supported by one
teenager only. This may have been because of the
way participants used their standing frames at
school and because overall the participants seemed
to have control over standing frame usage at home.
This is positive and means that home activities,
participation and psychosocial development are not
likely to be impeded by standing frame use if
children have this control. Children would benefit
from having choice around standing frame use at
school. The anecdotes regarding home use
provided by the primary school children who are
full-time wheelchair users (GMFCS-E & R level IV
and V) support Strauss’ view as described by
Mulderij (2000), that standing is an important
feature of being human and being in the frame
seemed to give them a sense of body vitality, which
is something children with physical restrictions may
not often feel (Rasmark Hammar et al, 2009).
The participants all gave reasons for standing that
are similar to the reasons given by the
physiotherapists in the Wintergold et al (2008)
study. This leads to the same suggestion from Bush
and Biggs (2011) that children are influenced and
36
accept the reasons given by physiotherapists
regarding use of standing frames. These reasons do
not have much scientific backing but
physiotherapists must consider the potential
physical adverse effects of not introducing a
standing frame (Damiano, 2004; Bush et al, 2010).
There is a reliance on the physiotherapist to have
good clinical reasoning abilities when putting a
standing frame in place especially since the
participants in this study seemed to feel a pressure
to use the standing frame for reasons which appear
to have been related to them by their
physiotherapist. A link between lack of
understanding and reluctance to use a standing
frame was also demonstrated in this study.
Participants were at ease using their standing frame
in the presence of people who knew them and
accepted their extra needs and equipment. Feeling
this comfort and acceptance is crucial for positive
identity formation (Rasmark Hammar et al, 2009).
The data demonstrates that individual feelings may
need to be discussed to ensure those who are selfconscious about being in the standing frame or who
have strong feelings about being different or
“standing out” have their needs addressed
adequately. In late childhood, self-awareness
increases and fitting in with a peer group becomes
increasingly important approaching adolescence
(Carr, 2006). The feelings of difference expressed by
two of the participants, therefore, would not be
unexpected but such feelings need to be addressed
to optimise psychosocial development.
All participants mentioned that they had
experienced some physical discomfort and although
this did not seem to have caused lasting distress,
sorting out problems regarding comfort was
important to them. They may have suggested more
improvements related to this area rather than
activity and participation as they may have had
more or stronger negative experiences related to
comfort than activity and participation. This
demonstrates regular review of the standing frame
directly with the child is important although it is not
within the remit of this study to suggest a timeframe
for this to happen in. Interestingly the children in
this study did not suggest changes to the aesthetics
of the frame, which perhaps indicated they were
satisfied with their frames’ appearances.
Additional research is required to confirm and
explore further the results of this study. The sample
in this study was small and from a specific cultural
context and for that reason, it mainly informs local
practice. Extending sampling beyond the North
East region would have resulted in a stronger
exploration of Irish children’s experiences. The
main limitation of this study is that data was
analysed by only one person. It is hoped this is
compensated for somewhat by providing a clear
account of how the data was analysed. As
participants were asked to validate a copy of their
interview transcript rather than the interpretation of
the data, this was really a process of error reduction
and an opportunity to seek further information
rather than respondent validation (Mays and Pope,
2006). It would have been preferable to send out a
copy of the data interpretation to the participants
instead but unfortunately the project timeframe did
not allow for this. No children with mild
intellectual disability (IQ 50-69) agreed to
participate and the views of those who do not have
a reliable method of communication are not
included. This study adds to wider practice by
demonstrating there is more to standing than
protecting and promoting body structure and
function. It highlights some improvements, which
could add to the comfort and independent use of
standing frames and provides physiotherapists with
information for consideration in their practice.
Conclusion
When utilising a standing frame as part of
physiotherapy for a young person with CP,
consideration should be given by physiotherapists
to all concepts related to a child’s life and
development. No standing frame assessment which
includes concepts related to anything other than
body structure and function appears to exist.
Development of an assessment which includes
concepts and issues identified could be indicated.
Motor Disorders Of Children With Cerebral Palsy: Clinics In
Development Medicine No. 161. 2nd Ed., London, Mac Keith
Press, 161-169.
Gough M (2009). Continuous postural management and
the prevention of deformity in children with cerebral
palsy: an appraisal. Developmental Medicine and Child
Neurology, 51 (2), 105-110.
Lin JP (2004). The assessment and management of
hypertonus in cerebral palsy: a physiological atlas (“road
map”) In: Scrutton D, Damiano D, Mayston M (Eds.)
Management Of The Motor Disorders Of Children With
Cerebral Palsy: Clinics In Development Medicine No. 161. 2nd
Ed., London, Mac Keith Press, 85-104.
Mays N and Pope C (2006). Quality in qualitative health
research. In: Pope C and Mays N (Eds.). Qualitative
Research In Health Care. 3rd Ed., Oxford, Blackwell
Publishing, 82-101.
Mulderij KJ. (2000). Dualistic Notions About Children
With Motor Disabilities: Hands To Lean On Or To Reach
Out? Qualitative Health Research, 10 (1), 39 – 50.
Palisano R, Rosenbaum P, Bartlett D And Livingston M
(2007). GMFCS – E & R Gross Motor Function
Classification System Expanded And Revised. [Online].
Last Accessed 16 December 2013At:
Http://Motorgrowth.Canchild.Ca/En/Gmfcs/Resources
/Gmfcs-Er.Pdf
Rasmark Hammar G, Ozolins A, Idvall E And Rudebeck
Ce (2009). Body Image In Adolescents With Cerebral
Palsy. Journal Of Child Health Care, 13 (1), 19-29.
Rippon H (2006). Practical Pragmatics, Prag6. Keighley,
Black Sheep Press.
Rippon H (2010). Emotions/Facial Expressions, Prag1. 2nd
Ed., Keighley, Black Sheep Press.
References
Braun V and Clarke V (2006). Using thematic analysis In
psychology. Qualitative Research in Psychology, 3 (2), 77-101.
Bush S and Biggs R (2011). Assisted standing –
experiences of children with cerebral palsy and their
physiotherapists. Journal of the Association of Paediatric
Chartered Physiotherapists, 2 (3), 3-10.
Bush S, Daniels N, Caulton J, Davis A, Jex J, Stern G,
William E and Bostock S (2010). Guidance on assisted
standing for children with cerebral palsy. Journal of the
Association of Paediatric Chartered Physiotherapists, 2 (1), 310.
Carr A (2006). The Handbook of Child and Adolescent Clinical
Psychology: A Contextual Approach. 2nd Ed., London,
Routledge.
Damiano D (2004). Physiotherapy management in
cerebral palsy: moving beyond philosophies. In: Scrutton
D, Damiano D, Mayston M (Eds.) Management Of The
Rosenbaum P. And Gorter J.W. (2012). The ‘F-Words’ In
Childhood Disability: I Swear This Is How We Should
Think! Child: Care, Health And Development, 38 (4), 457-463.
Wiles R, Charles V, Crow G And Heath S (2004). Informed
Consent And The Research Process. [Online]. In: Esrc
Research Methods Festival, Oxford, July 2nd 2004. Last
Accessed 16 December 2013 At:
Http://Www.Sociology.Soton.Ac.Uk/Proj/Informed_Co
nsent/Methsfest%20.Rtf
Wintergold A, Pountney T, Cowan D (2008). The Use Of
Standing Supports For Children With Disabilities. Journal
Of The Association Of Paediatric Chartered Physiotherapists,
(126), 13-19.
World Health Organisation (2001) International
Classification Of Functioning, Disability And Health (Icf).
[Online]. Last Accessed 16 December 2013 At:
Http://Www.Who.Int/Classifications/Icf/
37
A Literature Review of the Ponseti Method of Clubfoot Treatment
Sam Double BSc (HONS)
Chelsea Children’s Hospital, Chelsea and Westminster Hospital, London
Author’s email: Sam.Double@chelwest.nhs.uk
________________________________________________________________________________
INTRODUCTION
Congenital Talipes Equinovarus (CTEV), or ‘clubfoot’ as it is also commonly referred to, is a structural foot
deformity and both terminologies will be used interchangeably within this paper. If left untreated it can
cause considerable disability, which may lead to many employment and social difficulties, as still seen in
third world countries.
Over the last decade ‘the Ponseti method of clubfoot manipulation and casting, achilles tendon tenotomy,
and foot abduction bracing have become the primary treatment for idiopathic clubfoot around the world’
(Dobbs et al, 2009).
This paper will search and critically appraise the relevant available literature on the Ponseti method,
particularly with regards to long term outcomes, importance of bracing and best age to start treatment along
with comparisons to other techniques of clubfoot correction.
________________________________________________________________________________________________
Background
‘Epidemiological studies report that the incidence of
clubfoot varies from 1 to 4 per thousand live births’
(Carroll, 2011), differing widely across races. In
Europe it is estimated to be 1.2 per 1000 births and
associated with other congenital abnormalities in
approximately 20% of cases (Siapkara & Duncan,
2007). Although it is one of the most common lower
limb musculoskeletal disorders recognisable at
birth, its cause is still widely unknown (Dobbs et al,
2009). It is known, however, that clubfoot is
identifiable in utero with antenatal scans and that 20
to 24 week scans are more reliable for diagnosis than
earlier scans (Siapkara & Duncan, 2007) and
‘consists of four components: equinus, hindfoot
varus, forefoot adductus, and cavus. When
untreated, children with clubfoot walk on the sides
and/or tops of their feet, resulting in callus
formation, potential skin and bone infection,
inability to wear standard shoes, and substantial
limitations in mobility and employment
opportunities’ (Dobbs et al, 2009).
The Ponseti method of clubfoot correction was
developed by Professor Ignacio Ponseti, in the
1940’s, who based his principle on the presentation
of clubfoot through anatomic dissections and
radiographs. The Ponseti method can be ‘logically
divided into two phases: the treatment phase during
which the deformity is corrected completely, and the
maintenance phase, during which a foot abduction
orthosis is used to prevent recurrence’ (Scher, 2005).
38
The treatment phase involves the use of full length
plaster of Paris casts used to hold the manipulation
positions. It is the initial manipulation and cast
where the cavus is corrected first, aligning the
forefoot and the hindfoot, that is unique to the
Ponseti method. This pronates the forefoot in
relation to the heel, although the overall cast
position may appear supinated (Scher, 2005). The
adductus is corrected next, followed by the varus
deformity, with weekly manipulation and cast
changes, but never with direct manipulation of the
heel, which is again different to other conservative
methods. Finally once all this is fully corrected, the
equinus deformity is addressed by a percutaneous
achilles tendon tenotomy if required, followed by a
further three weeks of casting. ‘A total of five or six
casts are typically required to correct the foot’
(Scher, 2005), although more may be required for an
atypical or syndromic foot. A foot abduction brace
is then worn ‘for 23 hours per day for the first three
months after casting and then while sleeping for
several years to follow, usually until around three or
four’ (Scher, 2005).
Literature Search
The Ponseti method is relatively cheap to carry out
and a treatment method with a reported high level
of family satisfaction (Shack & Eastwood, 2006), but
does the evidence support its use in terms of
outcomes, independently and versus other methods
of clubfoot correction? What is the best age to start
treatment and how important is the use of foot
S. Double / APCP Journal Volume 5 Number 1 (2014) 38-49
abduction orthoses following casting?
A literature search using the keywords of Ponseti,
Ponseti & outcomes/treatment/method, was
carried out using OVID, AMED, CINAHL, Medline,
Pubmed and Cochrane Online Databases. No limit
on dates published was set, but only papers written
in English were sourced. A total number of 97
relevant articles were found and after eliminating
any duplicates, the abstracts of 68 papers were
reviewed. An inclusion criteria of trial design was
used, based on the hierarchy of evidence
(Greenlaugh, 2010). Only systematic reviews,
randomised control trials (RCTs) and observational
studies looking at the Ponseti method of treatment
in Primary Idiopathic CTEV were included,
excluding studies on clubfoot associated with other
abnormalities and treatment at second stage post
relapse. Forty-two studies met these inclusion
criteria. These studies were reviewed for this paper
(Figure 1).
Figure 1 – Literature search overview
Ponseti Outcomes
Ponseti’s long term outcomes described follow-up
of patients after 5-13 years and then after 10-27
years (Ponseti & Smoley, 2009; Laaveg & Ponseti,
1980). Good results are described in 71% of 67
patients (94 clubfeet) in the first paper although it is
not clear how the definition of good outcome was
reached. In the later paper an 88.5% ‘satisfactory
outcome’ and 90% patient satisfaction was reported
although both of these ‘depended heavily on the
patient’s subjective response’. Ponseti’s method
seemed to be indicating that it could produce
satisfactory functional results in a large percentage
of congenital club feet (Laaveg & Ponseti, 1980) but
further research is clearly needed to back up the use
of this method for initial clubfoot treatment.
A systematic review of the ‘management of
congenital talipes equinovarus using the Ponseti
method’ was carried out by Jowett et al in 2011. On
review of the available literature this study
concludes that ‘the current best practice for the
treatment of CTEV is the original Ponseti method,
with minimal adjustments being hyper-abduction of
the foot in the final cast and the need for longerterm bracing up to four years’.
There are many other studies looking at outcomes
following use of the documented Ponseti method in
idiopathic clubfoot, with follow up times varying
from immediately after initial treatment (Colburn &
Williams, 2003) to a minimum 5 years post
treatment (Bor et al, 2009). All are clinical cohort
studies or case series findings, with no randomised
control trials, due to there being no comparisons.
Similar findings of 95% of 57 clubfeet (Colburn &
Williams, 2003) and 97% of 134 clubfeet (Goksan et
al, 2006) treated with Ponseti method not needing
more extensive surgical (posteromedial release)
intervention are documented. Clinically satisfactory
feet are reported in 89% of 55 feet (Verma et al, 2011)
and Khan & Kumar (2010) document 85.7% of 25
feet fully corrected using Ponseti method alone.
Shack & Eastwood (2006) showed 97.5% of 40 feet
corrected and a high level of parent satisfaction with
a physiotherapy-delivered Ponseti service.
Increased risk of relapse following treatment is
documented in the more severe feet, using Dimeglio
or Pirani scores to classify (Panjavi et al, 2012;
Zhang et al, 2011), those where initial treatment
started after 6 months of age (Abdelgawad et al,
2007) or in feet requiring a higher number of casts to
initial correction (Bor et al, 2009). Willis et al (2009),
however, found recurrence was similar despite age
at presentation, gender, tenotomy or previous
treatment. It is difficult to compare outcomes across
papers due to the difference in outcome measures
used. A major limitation across most of these studies
is also the variation in the demographics or severity
of the foot position at initial presentation, which are
not analysed statistically and make it difficult to
verify the significance of any difference in outcomes.
The paper by Dobbs et al in 2004 looked at ‘the
factors predictive of outcome after use of the Ponseti
method for the treatment of clubfeet’. It was found
that ‘the more severe the initial deformity, the more
casts were required to obtain correction’, but they
achieved 100% initial correction in all 86 feet treated
with the Ponseti method. Recurrence of deformity
was found to be most strongly associated with non-
39
A Literature Review of the Ponseti Method of Clubfoot Treatment
Sam Double BSc (HONS)
Author’s email: Sam.Double@chelwest.nhs.uk
________________________________________________________________________________
INTRODUCTION
Congenital Talipes Equinovarus (CTEV), or ‘clubfoot’ as it is also commonly referred to, is a structural foot
deformity and both terminologies will be used interchangeably within this paper. If left untreated it can
cause considerable disability, which may lead to many employment and social difficulties, as still seen in
third world countries.
Over the last decade ‘the Ponseti method of clubfoot manipulation and casting, achilles tendon tenotomy,
and foot abduction bracing have become the primary treatment for idiopathic clubfoot around the world’
(Dobbs et al, 2009).
This paper will search and critically appraise the relevant available literature on the Ponseti method,
particularly with regards to long term outcomes, importance of bracing and best age to start treatment along
with comparisons to other techniques of clubfoot correction.
________________________________________________________________________________________________
Background
‘Epidemiological studies report that the incidence of
clubfoot varies from 1 to 4 per thousand live births’
(Carroll, 2011), differing widely across races. In
Europe it is estimated to be 1.2 per 1000 births and
associated with other congenital abnormalities in
approximately 20% of cases (Siapkara & Duncan,
2007). Although it is one of the most common lower
limb musculoskeletal disorders recognisable at
birth, its cause is still widely unknown (Dobbs et al,
2009). It is known, however, that clubfoot is
identifiable in utero with antenatal scans and that 20
to 24 week scans are more reliable for diagnosis than
earlier scans (Siapkara & Duncan, 2007) and
‘consists of four components: equinus, hindfoot
varus, forefoot adductus, and cavus. When
untreated, children with clubfoot walk on the sides
and/or tops of their feet, resulting in callus
formation, potential skin and bone infection,
inability to wear standard shoes, and substantial
limitations in mobility and employment
opportunities’ (Dobbs et al, 2009).
The Ponseti method of clubfoot correction was
developed by Professor Ignacio Ponseti, in the
1940’s, who based his principle on the presentation
of clubfoot through anatomic dissections and
radiographs. The Ponseti method can be ‘logically
divided into two phases: the treatment phase during
which the deformity is corrected completely, and the
maintenance phase, during which a foot abduction
orthosis is used to prevent recurrence’ (Scher, 2005).
38
The treatment phase involves the use of full length
plaster of Paris casts used to hold the manipulation
positions. It is the initial manipulation and cast
where the cavus is corrected first, aligning the
forefoot and the hindfoot, that is unique to the
Ponseti method. This pronates the forefoot in
relation to the heel, although the overall cast
position may appear supinated (Scher, 2005). The
adductus is corrected next, followed by the varus
deformity, with weekly manipulation and cast
changes, but never with direct manipulation of the
heel, which is again different to other conservative
methods. Finally once all this is fully corrected, the
equinus deformity is addressed by a percutaneous
achilles tendon tenotomy if required, followed by a
further three weeks of casting. ‘A total of five or six
casts are typically required to correct the foot’
(Scher, 2005), although more may be required for an
atypical or syndromic foot. A foot abduction brace
is then worn ‘for 23 hours per day for the first three
months after casting and then while sleeping for
several years to follow, usually until around three or
four’ (Scher, 2005).
Literature Search
The Ponseti method is relatively cheap to carry out
and a treatment method with a reported high level
of family satisfaction (Shack & Eastwood, 2006), but
does the evidence support its use in terms of
outcomes, independently and versus other methods
of clubfoot correction? What is the best age to start
treatment and how important is the use of foot
abduction orthoses following casting?
A literature search using the keywords of Ponseti,
Ponseti & outcomes/treatment/method, was
carried out using OVID, AMED, CINAHL, Medline,
Pubmed and Cochrane Online Databases. No limit
on dates published was set, but only papers written
in English were sourced. A total number of 97
relevant articles were found and after eliminating
any duplicates, the abstracts of 68 papers were
reviewed. An inclusion criteria of trial design was
used, based on the hierarchy of evidence
(Greenlaugh, 2010). Only systematic reviews,
randomised control trials (RCTs) and observational
studies looking at the Ponseti method of treatment
in Primary Idiopathic CTEV were included,
excluding studies on clubfoot associated with other
abnormalities and treatment at second stage post
relapse. Forty-two studies met these inclusion
criteria. These studies were reviewed for this paper
(Figure 1).
Figure 1 – Literature search overview
Ponseti Outcomes
Ponseti’s long term outcomes described follow-up
of patients after 5-13 years and then after 10-27
years (Ponseti & Smoley, 2009; Laaveg & Ponseti,
1980). Good results are described in 71% of 67
patients (94 clubfeet) in the first paper although it is
not clear how the definition of good outcome was
reached. In the later paper an 88.5% ‘satisfactory
outcome’ and 90% patient satisfaction was reported
although both of these ‘depended heavily on the
patient’s subjective response’. Ponseti’s method
seemed to be indicating that it could produce
satisfactory functional results in a large percentage
of congenital club feet (Laaveg & Ponseti, 1980) but
further research is clearly needed to back up the use
of this method for initial clubfoot treatment.
A systematic review of the ‘management of
congenital talipes equinovarus using the Ponseti
method’ was carried out by Jowett et al in 2011. On
review of the available literature this study
concludes that ‘the current best practice for the
treatment of CTEV is the original Ponseti method,
with minimal adjustments being hyper-abduction of
the foot in the final cast and the need for longerterm bracing up to four years’.
There are many other studies looking at outcomes
following use of the documented Ponseti method in
idiopathic clubfoot, with follow up times varying
from immediately after initial treatment (Colburn &
Williams, 2003) to a minimum 5 years post
treatment (Bor et al, 2009). All are clinical cohort
studies or case series findings, with no randomised
control trials, due to there being no comparisons.
Similar findings of 95% of 57 clubfeet (Colburn &
Williams, 2003) and 97% of 134 clubfeet (Goksan et
al, 2006) treated with Ponseti method not needing
more extensive surgical (posteromedial release)
intervention are documented. Clinically satisfactory
feet are reported in 89% of 55 feet (Verma et al, 2011)
and Khan & Kumar (2010) document 85.7% of 25
feet fully corrected using Ponseti method alone.
Shack & Eastwood (2006) showed 97.5% of 40 feet
corrected and a high level of parent satisfaction with
a physiotherapy-delivered Ponseti service.
Increased risk of relapse following treatment is
documented in the more severe feet, using Dimeglio
or Pirani scores to classify (Panjavi et al, 2012;
Zhang et al, 2011), those where initial treatment
started after 6 months of age (Abdelgawad et al,
2007) or in feet requiring a higher number of casts to
initial correction (Bor et al, 2009). Willis et al (2009),
however, found recurrence was similar despite age
at presentation, gender, tenotomy or previous
treatment. It is difficult to compare outcomes across
papers due to the difference in outcome measures
used. A major limitation across most of these studies
is also the variation in the demographics or severity
of the foot position at initial presentation, which are
not analysed statistically and make it difficult to
verify the significance of any difference in outcomes.
The paper by Dobbs et al in 2004 looked at ‘the
factors predictive of outcome after use of the Ponseti
method for the treatment of clubfeet’. It was found
that ‘the more severe the initial deformity, the more
casts were required to obtain correction’, but they
achieved 100% initial correction in all 86 feet treated
with the Ponseti method. Recurrence of deformity
was found to be most strongly associated with non-
39
compliance with the foot abduction brace after
casting with ‘a patient whose family does not
comply with the protocol for the orthosis being 183
times more likely to have a relapse than is one
whose family complies’ (odds ratio=183 and 95%
confidence interval = 9.5to 3519; p<0.00001).
Parental education was also found to be a
significant factor affecting reoccurrence. In contrast
to the previous studies, however, they found no
significant effect on the risk of recurrence with
‘classification of the severity of the deformity, the
age at the time of initiation of treatment’ or due to
‘gender, race, parental marital status, source of
medical insurance, or parental income’.
Comparisons
Making direct comparisons between the Ponseti
method and other methods means that the rigid
study design of a RCT can be used and should add
weight to the results identified.
Three RCTs compared outcomes between Ponseti
and the Kite method, which is another conservative
method of clubfoot treatment using manipulation
and casting. Sud et al (2008) found that despite the
difference in percentage of relapse in the 2 groups
not being statistically significant (p>0.05), that the
rate of correction was significantly higher in the
Ponseti group (p>0.001) and ‘Ponseti’s method also
corrected a significantly higher number of very
severe feet in a smaller period of time’ (p>0.05). In
agreement, Rijal et al (2010) found ‘the Ponseti
method of manipulation and casting was superior in
reduction and correction of clubfoot deformity as
compared to the Kite method’. The long term
results of the Kite and Ponseti methods are
compared in the RCT by Sanghvi & Mittel (2009)
who found that the Ponseti method needed fewer
casts in a shorter time frame, gave greater range of
ankle movement and fewer residual deformities,
using an unpaired t-test with significant p values.
Papers have also compared the Ponseti method to
other conservative treatment methods such as the
French Physiotherapy method (Chotel et al, 2011;
Faulks & Richards, 2009; Gottschalk et al, 2010;
Karol et al, 2009), the Italian method introduced by
Marino-Zuco (Farsetti et al, 2009; Ippolito et al,
2003), a Romanian method (Cosma et al, 2007),
Copenhagen method (Aurell et al, 2005) or various
casting methods (Herzenberg et al, 2002). None of
these studies were RCTs but most showed better
results in terms of decreased pain (Ippolito et al,
2003), increased range of movement (Herzenberg et
al, 2002), less need for surgery (Cosma et al, 2007;
Chotel et al, 2011) and permanent correction
40
(Farsetti et al, 2009) in favour of the Ponseti method
although the lack of randomisation and small
sample sizes means these results should be
interpreted with caution.
‘Ponseti versus surgical treatment for idiopathic
clubfoot’ was analysed in an RCT by Zwick et al
(2009). They compared any differences in foot
function and health status as outcomes at 3½ years
old. Results showed statistically significant higher
functional rating system scores, passive mobility of
the feet and parental satisfaction in the Ponseti
group.
A further study by Clarke et al (2011) makes the
conclusion that in certain circumstances, surgery
should still be chosen instead of Ponseti serial
casting.
Orthosis Use
Ponseti & Smoley (2009) recommend the foot
abduction brace is worn full time for the first two to
three months after correction and part time
thereafter until the child is from 3 to 5 years of age.
A study by Ramirez et al (2011) found that
‘compliance with the brace showed a significant
association with the recurrence risk (OR=0.1111,
P=0.026). They found that a family with poor
compliance of brace use is nine times more likely to
have recurrence than a family that follows the brace
protocol (95% confidence interval=2.2-38.5)’. This
study had also looked at other factors such as sex,
unilateral/bilateral, age at initial treatment, time
casting, tenotomy, Dimeglio score, family education
level and income that may affect relapse or
compliance with the brace protocol and found no
statistically significant difference between these on
either. Similar findings of deterioration in Pirani
and Dimeglio scores with non-compliance of foot
abduction orthoses were found by Thacker et al
(2005). Despite its apparent benefits, compliance
with the foot abduction orthoses does seem to be an
issue for parents and families.
Other studies have looked to see if a unilateral foot
abduction orthosis/ankle foot orthoses (AFO) has
comparable results with a standard foot abduction
orthoses (FAO). Janicki et al (2011) found a
statistically significant increase in recurrent
deformity using an AFO (P<0.001, 95% confidence
interval, OR 10.6) meaning the use of an AFO was
associated with a 10.6 times higher risk of
recurrence and recommended foot abduction
orthoses during the maintenance phase. George et
al (2011) also found using a unilateral foot
abduction orthoses gave higher recurrence rate
although this study did not use large enough
numbers for a formal statistical analysis.
Age
Does age at beginning of treatment make a
difference to outcome and if so when should casting
be commenced?
Some reference to this has been made in the
outcome section of this paper, with the suggestion
that the later casting is started (over 6 months) the
greater the risk of recurrence (Abdelgawad et al,
2007). Two studies have looked at this question
directly and report different outcomes. Alves et al
(2009) found no difference in the ‘number of casts,
tenotomies, success in terms of rate of initial
correction, rate of recurrence, and the rate of tibialis
anterior transference’ between groups of younger
than 6 months and those older than 6 months at the
beginning of treatment. Iltar et al (2010) conclude
that the results of their study indicate that outcomes
are better when Ponseti cast treatment begins later
than the first month of life, or when the involved
foot is ≥8 cm in length. This contradicts the concept
of many who suppose that Ponseti casting should
begin on the day of birth if possible (Laaveg &
Ponseti, 1980; Bor et al, 2009; Dobbs & Gurnett,
2009).
Conclusion
From this literature search a large quantity of
studies were found looking at the Ponseti method of
clubfoot treatment. Despite some individual
limitations of these papers (Appendix 1), there
appears agreement across results in favour of this
method, both in long term outcomes of function,
passive mobility of the feet, and avoidance of more
extensive soft tissue surgery, when using the Ponseti
method and in comparison to other methods.
The importance of using foot abduction orthoses
after casting correction is strongly supported by the
evidence; however the ideal age to begin treatment
is less clear and requires more evidence.
The use of Plaster of Paris to achieve correction is
supported and these should be above knee to
adhere fully to the Ponseti method.
Modifications
An RCT by Pittner et al (2008) compared using
Plaster of Paris (POP) versus semi rigid fibre glass
and found statistically lower severity scores after
treatment in the POP group. A further study by
Brewster et al (2009) looked at using soft cast
material and found a longer time in cast required
using this.
An RCT comparing standard Ponseti versus
accelerated (twice weekly casting) by Harnett et al
(2011) found no significant difference between the 2
groups in terms of number of casts required to full
correction. With regards to longer term outcomes, a
study by Xu et al (2011) states no significant
difference between similar protocols with regards to
correction at 4 years. A paper by Narasimhan &
Bhatt (2011) also looked at modifying the technique
by extending the time between later casts and
documented good results (Pirani score 0) in 16 out
of 21 children. They conclude that ‘as long as one
strongly adheres to the principles of Ponseti to
achieve full correction of clubfoot and are conscious
of maintaining the same, any modifications of the
management protocol in one’s practice especially in
terms of correction maintenance, can still yield good
results.’
41
compliance with the foot abduction brace after
casting with ‘a patient whose family does not
comply with the protocol for the orthosis being 183
times more likely to have a relapse than is one
whose family complies’ (odds ratio=183 and 95%
confidence interval = 9.5to 3519; p<0.00001).
Parental education was also found to be a
significant factor affecting reoccurrence. In contrast
to the previous studies, however, they found no
significant effect on the risk of recurrence with
‘classification of the severity of the deformity, the
age at the time of initiation of treatment’ or due to
‘gender, race, parental marital status, source of
medical insurance, or parental income’.
Comparisons
Making direct comparisons between the Ponseti
method and other methods means that the rigid
study design of a RCT can be used and should add
weight to the results identified.
Three RCTs compared outcomes between Ponseti
and the Kite method, which is another conservative
method of clubfoot treatment using manipulation
and casting. Sud et al (2008) found that despite the
difference in percentage of relapse in the 2 groups
not being statistically significant (p>0.05), that the
rate of correction was significantly higher in the
Ponseti group (p>0.001) and ‘Ponseti’s method also
corrected a significantly higher number of very
severe feet in a smaller period of time’ (p>0.05). In
agreement, Rijal et al (2010) found ‘the Ponseti
method of manipulation and casting was superior in
reduction and correction of clubfoot deformity as
compared to the Kite method’. The long term
results of the Kite and Ponseti methods are
compared in the RCT by Sanghvi & Mittel (2009)
who found that the Ponseti method needed fewer
casts in a shorter time frame, gave greater range of
ankle movement and fewer residual deformities,
using an unpaired t-test with significant p values.
Papers have also compared the Ponseti method to
other conservative treatment methods such as the
French Physiotherapy method (Chotel et al, 2011;
Faulks & Richards, 2009; Gottschalk et al, 2010;
Karol et al, 2009), the Italian method introduced by
Marino-Zuco (Farsetti et al, 2009; Ippolito et al,
2003), a Romanian method (Cosma et al, 2007),
Copenhagen method (Aurell et al, 2005) or various
casting methods (Herzenberg et al, 2002). None of
these studies were RCTs but most showed better
results in terms of decreased pain (Ippolito et al,
2003), increased range of movement (Herzenberg et
al, 2002), less need for surgery (Cosma et al, 2007;
Chotel et al, 2011) and permanent correction
40
(Farsetti et al, 2009) in favour of the Ponseti method
although the lack of randomisation and small
sample sizes means these results should be
interpreted with caution.
‘Ponseti versus surgical treatment for idiopathic
clubfoot’ was analysed in an RCT by Zwick et al
(2009). They compared any differences in foot
function and health status as outcomes at 3½ years
old. Results showed statistically significant higher
functional rating system scores, passive mobility of
the feet and parental satisfaction in the Ponseti
group.
A further study by Clarke et al (2011) makes the
conclusion that in certain circumstances, surgery
should still be chosen instead of Ponseti serial
casting.
Orthosis Use
Ponseti & Smoley (2009) recommend the foot
abduction brace is worn full time for the first two to
three months after correction and part time
thereafter until the child is from 3 to 5 years of age.
A study by Ramirez et al (2011) found that
‘compliance with the brace showed a significant
association with the recurrence risk (OR=0.1111,
P=0.026). They found that a family with poor
compliance of brace use is nine times more likely to
have recurrence than a family that follows the brace
protocol (95% confidence interval=2.2-38.5)’. This
study had also looked at other factors such as sex,
unilateral/bilateral, age at initial treatment, time
casting, tenotomy, Dimeglio score, family education
level and income that may affect relapse or
compliance with the brace protocol and found no
statistically significant difference between these on
either. Similar findings of deterioration in Pirani
and Dimeglio scores with non-compliance of foot
abduction orthoses were found by Thacker et al
(2005). Despite its apparent benefits, compliance
with the foot abduction orthoses does seem to be an
issue for parents and families.
Other studies have looked to see if a unilateral foot
abduction orthosis/ankle foot orthoses (AFO) has
comparable results with a standard foot abduction
orthoses (FAO). Janicki et al (2011) found a
statistically significant increase in recurrent
deformity using an AFO (P<0.001, 95% confidence
interval, OR 10.6) meaning the use of an AFO was
associated with a 10.6 times higher risk of
recurrence and recommended foot abduction
orthoses during the maintenance phase. George et
al (2011) also found using a unilateral foot
abduction orthoses gave higher recurrence rate
although this study did not use large enough
numbers for a formal statistical analysis.
Age
Does age at beginning of treatment make a
difference to outcome and if so when should casting
be commenced?
Some reference to this has been made in the
outcome section of this paper, with the suggestion
that the later casting is started (over 6 months) the
greater the risk of recurrence (Abdelgawad et al,
2007). Two studies have looked at this question
directly and report different outcomes. Alves et al
(2009) found no difference in the ‘number of casts,
tenotomies, success in terms of rate of initial
correction, rate of recurrence, and the rate of tibialis
anterior transference’ between groups of younger
than 6 months and those older than 6 months at the
beginning of treatment. Iltar et al (2010) conclude
that the results of their study indicate that outcomes
are better when Ponseti cast treatment begins later
than the first month of life, or when the involved
foot is ≥8 cm in length. This contradicts the concept
of many who suppose that Ponseti casting should
begin on the day of birth if possible (Laaveg &
Ponseti, 1980; Bor et al, 2009; Dobbs & Gurnett,
2009).
Conclusion
From this literature search a large quantity of
studies were found looking at the Ponseti method of
clubfoot treatment. Despite some individual
limitations of these papers (Appendix 1), there
appears agreement across results in favour of this
method, both in long term outcomes of function,
passive mobility of the feet, and avoidance of more
extensive soft tissue surgery, when using the Ponseti
method and in comparison to other methods.
The importance of using foot abduction orthoses
after casting correction is strongly supported by the
evidence; however the ideal age to begin treatment
is less clear and requires more evidence.
The use of Plaster of Paris to achieve correction is
supported and these should be above knee to
adhere fully to the Ponseti method.
Modifications
An RCT by Pittner et al (2008) compared using
Plaster of Paris (POP) versus semi rigid fibre glass
and found statistically lower severity scores after
treatment in the POP group. A further study by
Brewster et al (2009) looked at using soft cast
material and found a longer time in cast required
using this.
An RCT comparing standard Ponseti versus
accelerated (twice weekly casting) by Harnett et al
(2011) found no significant difference between the 2
groups in terms of number of casts required to full
correction. With regards to longer term outcomes, a
study by Xu et al (2011) states no significant
difference between similar protocols with regards to
correction at 4 years. A paper by Narasimhan &
Bhatt (2011) also looked at modifying the technique
by extending the time between later casts and
documented good results (Pirani score 0) in 16 out
of 21 children. They conclude that ‘as long as one
strongly adheres to the principles of Ponseti to
achieve full correction of clubfoot and are conscious
of maintaining the same, any modifications of the
management protocol in one’s practice especially in
terms of correction maintenance, can still yield good
results.’
41
References
Orthopaedics B. 16; 317-321.
Abbas M, Qureshi OA, Jeelani LZ, Azam Q, Khan AQ,
Sabir AB (2008). Management of Congenital Talipes
Equinovarus by Ponseti Technique: A Clinical Study. The
Journal of Foot and Ankle Surgery. 47 (6) 541-5.
Dobbs MB, Rudzki JR, Purcell DB, Walton T, Porter KR,
Gurnett CA (2004). Factors Predictive of Outcome after
use of the Ponseti Method for the Treatment of Idiopathic
Clubfeet. The Journal of Bone and Joint Surgery. 86-A (1) 227.
Abdelgawad AA, Lehman WB, Van Bosse HJP, Scher DM,
Sala DA (2007). Treatment of idiopathic clubfoot using the
Ponseti method: minimum 2-year follow-up. Journal of
Pediatric Orthopaedics B. 16; 98-105.
Alves C, Escalda C, Fernandes P, Tavares D, Neves MC
(2009). Ponseti Method. Does Age at the Beginning of
Treatment Make a Difference? Clinical Orthopaedics Related
Research. 467; 1271-1277.
Aurell Y, Andriesse H, Johansson A, Jonsson K (2005).
Ultrasound assessment of early clubfoot treatment: a
comparison of the Ponseti method and a modified
Copenhagen method. Journal of Pediatric Orthopaedics B.
14; 347-357.
Brewster MBS, Gupta M, Pattison GTR, Dunn-van der
Ploeg ID (2008). Ponseti casting. A new soft option. The
Journal of Bone and Joint Surgery (Br). 90-B; 1512-15.
Bor N, Coplan JA, Herzenberg JE (2009). Ponseti
Treatment for Idiopathic Clubfoot. Minimum 5-year
Follow-up. Clinical Orthopaedic Related Research. 467; 12631270.
Caroll NC (2011). Clubfoot in the twentieth century:
where we were and where we may be going in the
twenty-first century. Journal of Pediatric Orthopaedics B. 21;
1-6.
Chaudhry S, Chu A, Labar AS, Sala DA, Van Bosse HJP,
Lehman WB (2011). Progression of idiopathic clubfoot
correction using the Ponseti method. Journal of Pediatric
Chotel F, Parot R, Seringe R, Berard J, Wicart P (2011).
Comparative Study: Ponseti Method Versus French
Physiotherapy for Initial Treatment of Idiopathic Clubfoot
Deformity. Journal of Pediatric Orthopaedics. 31 (3) 320-5.
Chu A, Lehman WB (2011). Persistent clubfoot deformity
following treatment by the Ponseti method. Journal of
Clarke NMP, Uglow MG, Valentine KM (2011).
Comparison of Ponseti Versus Surgical Treatment in
Congenital Talipes Equinovarus. The Journal of Foot and
Ankle Surgery. 50; 529-534.
Colburn M, Williams M (2003). Evaluation of the
Treatment of Idiopathic Clubfoot by Using the Ponseti
Method. The Journal of Foot and Ankle Surgery. 42 (5) 259267.
Cosma D, Vasilescu D, Vasilescu D, Valeanu M (2007).
Comparative results of the conservative treatment in
clubfoot by two different protocols. Journal of Pediatric
42
Dobbs MB, Gurnett CA (2009). Updates on Clubfoot:
Etiology and Treatment. Clinical Orthopaedic Related
Research. 467; 1146-1153.
Farsetti P, De Maio F, Russolillo L, Ippolito E (2009). CT
Study on the Effect of Different Treatment Protocols for
Clubfoot Pathology. Clinical Orthopaedics Related
Research.467; 1243-1249.
Faulks S, Richards BS (2009). Clubfoot Treatment. Ponseti
and French Functional Methods are Equally Effective.
Clinical Orthopaedic Related Research. 467; 1278-1282.
George HL, Unnikrishnan PN, Garg NK, Sampath J, Bruce
CE (2011). Unilateral foot abduction orthosis: is it a
substitute for Denis Browne boots following Ponseti
technique? Journal of Pediatric Orthopaedics B. 20; 22-5.
Greenhallgh T (2010). How to Read a Paper. The basics of
evidence based medicine. Oxford. Wiley-Blackwell.
Goksan SB, Bursali A, Bilgili F, Sivacioglu S, Ayanoglu S
(2006). Ponseti technique for the correction of idiopathic
clubfeet presenting up to 1 year of age. A preliminary
study in children with untreated or complex deformities.
Archives Orthopaedic Trauma and Surgery. 126; 15-21.
Gottschalk HP, Karol LA, Jeans KA (2010). Gait Analysis
of Children Treated for Moderate Clubfoot with Physical
Therapy Versus the Ponseti Cast Technique. Journal of
Pediatric Orthopaedics. 30 (3) 235-9.
Harnett P, Freeman R, Harrison WJ, Brown LC, Beckles V
(2011). An accelerated Ponseti versus the standard Ponseti
method. Journal of Bone and Joint Surgery Br 93-B: 404-8.
Herzenberg JE, Radler C, Bor N (2002). Ponseti Versus
Traditional Methods of Casting for Idiopathic Clubfoot.
Journal of Pediatric Orthopaedics. 22; 517-521.
Iltar S, Uysal M, Alemdaroglu KB, Aydogan NH, Kara T,
Atlihan D (2010). Treatment of Clubfoot with the Ponseti
Method: Should we Begin Casting in the Newborn Period
or Later? The Journal of Foot and Ankle Surgery. 49; 426-431.
Ippolito E, Farsetti P, Caterini R, Tudisco C (2003). LongTerm Comparative Results in Patients with Congenital
Clubfoot Treated with Two Different Protocols. The Journal
of Bone and Joint Surgery. 85-A (7) 1286-1294.
Janicki JA, Wright JG, Weir S, Narayanan UG (2011). A
comparison of ankle foot orthoses with foot abduction
orthoses to prevent recurrence following correction of
idiopathic clubfoot by the Ponseti method. The Journal of
Bone and Joint Surgery (Br). 93-B; 700-4
Management of congenital talipes equinovarus using the
Ponseti method. A Systematic Review. Journal of Bone and
Joint Surgery Br, 93-B; 1160-4.
Karol LA, Jeans K, ElHarawary R (2009). Gait Analysis
after Initial Nonoperative Treatment for Clubfeet. Clinical
Orthopaedic Related Research. 467; 1206-1213.
Khan SA, Kumar A (2010). Ponseti’s manipulation in
neglected clubfoot in children more than 7 years of age: a
prospective evaluation of 25 feet with long-term followup. Journal of Pediatric Orthopaedics B. 19; 385-9.
Laaveg SJ, Ponseti IV (1980). Long-term Results of
Treatment of Congenital Clubfoot. The Journal of Bone and
Joint Surgery. 62-A (1) 23-31.
Narasimhan R, Bhat P (2011). Modified Ponseti technique
of management of idiopathic clubfoot. Apollo Medicine. 8
(4) 281-6.
Panjavi B, Sharafatvaziri A, Zargarbashi RH, Mehrpour S
(2012). Use of the Ponseti Method in the Iranian
Population. Journal of Pediatric Orthopaedics. 32 (3) 11-14.
Pittner DE, Klingele KE, Beebe AC (2008). Treatment of
Clubfoot with the Ponseti Method. A comparison of
casting materials. Journal of Pediatric Orthopaedics, 28 (2)
250-3.
Ponseti IV, Smoley EN (2009). The Classic. Congenital
Club Foot: The Results of Treatment. Clinical Orthopaedic
Related Research. 467; 1133-1145. Reprint of Original. (1963)
Journal of Bone and Joint Surgery Am; 45; 261-344)
Ramirez N, Flynn JM, Fernandez S, Seda W, Macchiavelli
RE (2011). Orthosis Noncompliance After the Ponseti
Method for the Treatment of Idiopathic Clubfeet: A
Relevant Problem That Needs Re-evaluation. Journal of
Pediatric Orthopaedics 31 (6) 710-5.
Rijal R, Shrestha BP, Singh GK, Nepal P, Khanal GP, Rai P
(2010). Comparison of Ponseti and Kite’s method of
treatment for idiopathic clubfoot. Indian Journal of
Orthopaedics. 44 (2) 202-7.
Physiotherapist-delivered Ponseti service for the
management of idiopathic congenital talipes equinovarus
foot deformity. The Journal of Bone and Joint Surgery. 88-B
(8) 1085-9.
Sud A, Tiwari A, Sharma D, Kapoor S (2008). Ponseti’s vs.
Kite’s method in the treatment of clubfoot-a prospective
randomised study. International Orthopaedics. 32; 409-413.
Thacker MM, Scher DM, Sala D, P van Bosse HJ, Feldman
DS, Lehman WB (2005). Use of the Foot Abduction
Orthosis Following Ponseti Casts. Is it Essential? Journal of
Verma A, Mehtani A, Sural S, Maini L, Gautam VK,
Basran SS, Arora S (2011). Management of idiopathic
clubfoot in toddlers by Ponseti’s method. Journal of
Willis RB, Al-Hunaishel M, Guerra L, Kontio K (2009).
What Proportion of Patients Need Extensive Surgery After
Failure of the Ponseti Technique for Clubfoot. Clinical
Xu RJ (2011). A Modified Ponseti Method for the
Treatment of Idiopathic Clubfoot: A Preliminary Report.
Journal of Pediatric Orthopaedics, 31 (3) 317-9.
Yapp LZ, Arnold GP, Nasir S, Wang W, Maclean JGB,
Abboud RJ (2012). Assessment of talipes equinovarus
treated by Ponseti technique: Three-year preliminary
report. The Foot. Article in press,
doi:10,1016/j.foot.2012.01.001
Zhang W, Richards BS, Faulks ST, Karol LA, Rathjen KA,
Browne RH (2011). Initial severity rating of idiopathic
clubfeet is an outcome predictor at age two years. Journal
of Pediatric Orthopaedics B. 21; 16-19.
Zwick EB, Kraus T, Maizen C, Steinwender G, Linhart WE
(2009). Comparison of Ponseti versus Surgical Treatment
for Idiopathic Clubfoot. Clinical Orthopaedics Related
Research. 467; 2668-2676.
Sanghvi AV, Mittal VK (2009). Conservative management
of idiopathic clubfoot: Kite versus Ponseti method. Journal
of Orthopaedic Surgery. 17 (1) 67-71.
Siapkara A, Duncan R (2007). Congenital talipes
equinovarus. A Review of Current Management. The
Journal of Bone and Joint Surgery. 89-B (8) 995-1000.
Scher DM. (2005). The Ponseti Method for Clubfoot
Correction. Operative Techniques in Orthopaedics. 15; 345-9.
Shack N, Eastwood D (2006). Early Results of a
Jowett CR, Morcuende JA, Ramachandran M (2011).
43
References
Abbas M, Qureshi OA, Jeelani LZ, Azam Q, Khan AQ,
Sabir AB (2008). Management of Congenital Talipes
Equinovarus by Ponseti Technique: A Clinical Study. The
Journal of Foot and Ankle Surgery. 47 (6) 541-5.
Gurnett CA (2004). Factors Predictive of Outcome after
use of the Ponseti Method for the Treatment of Idiopathic
Clubfeet. The Journal of Bone and Joint Surgery. 86-A (1) 227.
Abdelgawad AA, Lehman WB, Van Bosse HJP, Scher DM,
Sala DA (2007). Treatment of idiopathic clubfoot using the
Ponseti method: minimum 2-year follow-up. Journal of
Treatment Make a Difference? Clinical Orthopaedics Related
Research. 467; 1271-1277.
Aurell Y, Andriesse H, Johansson A, Jonsson K (2005).
Ultrasound assessment of early clubfoot treatment: a
comparison of the Ponseti method and a modified
Copenhagen method. Journal of Pediatric Orthopaedics B.
14; 347-357.
Bor N, Coplan JA, Herzenberg JE (2009). Ponseti
Treatment for Idiopathic Clubfoot. Minimum 5-year
Follow-up. Clinical Orthopaedic Related Research. 467; 12631270.
Caroll NC (2011). Clubfoot in the twentieth century:
where we were and where we may be going in the
twenty-first century. Journal of Pediatric Orthopaedics B. 21;
1-6.
Chaudhry S, Chu A, Labar AS, Sala DA, Van Bosse HJP,
Lehman WB (2011). Progression of idiopathic clubfoot
correction using the Ponseti method. Journal of Pediatric
Chotel F, Parot R, Seringe R, Berard J, Wicart P (2011).
Comparative Study: Ponseti Method Versus French
Physiotherapy for Initial Treatment of Idiopathic Clubfoot
Deformity. Journal of Pediatric Orthopaedics. 31 (3) 320-5.
Chu A, Lehman WB (2011). Persistent clubfoot deformity
following treatment by the Ponseti method. Journal of
Clarke NMP, Uglow MG, Valentine KM (2011).
Comparison of Ponseti Versus Surgical Treatment in
Congenital Talipes Equinovarus. The Journal of Foot and
Ankle Surgery. 50; 529-534.
Colburn M, Williams M (2003). Evaluation of the
Treatment of Idiopathic Clubfoot by Using the Ponseti
Method. The Journal of Foot and Ankle Surgery. 42 (5) 259267.
Cosma D, Vasilescu D, Vasilescu D, Valeanu M (2007).
Comparative results of the conservative treatment in
clubfoot by two different protocols. Journal of Pediatric
42
Dobbs MB, Gurnett CA (2009). Updates on Clubfoot:
Etiology and Treatment. Clinical Orthopaedic Related
Research. 467; 1146-1153.
Farsetti P, De Maio F, Russolillo L, Ippolito E (2009). CT
Study on the Effect of Different Treatment Protocols for
Clubfoot Pathology. Clinical Orthopaedics Related
Research.467; 1243-1249.
Faulks S, Richards BS (2009). Clubfoot Treatment. Ponseti
and French Functional Methods are Equally Effective.
Clinical Orthopaedic Related Research. 467; 1278-1282.
George HL, Unnikrishnan PN, Garg NK, Sampath J, Bruce
CE (2011). Unilateral foot abduction orthosis: is it a
substitute for Denis Browne boots following Ponseti
technique? Journal of Pediatric Orthopaedics B. 20; 22-5.
Greenhallgh T (2010). How to Read a Paper. The basics of
evidence based medicine. Oxford. Wiley-Blackwell.
Goksan SB, Bursali A, Bilgili F, Sivacioglu S, Ayanoglu S
(2006). Ponseti technique for the correction of idiopathic
clubfeet presenting up to 1 year of age. A preliminary
study in children with untreated or complex deformities.
Archives Orthopaedic Trauma and Surgery. 126; 15-21.
Gottschalk HP, Karol LA, Jeans KA (2010). Gait Analysis
of Children Treated for Moderate Clubfoot with Physical
Therapy Versus the Ponseti Cast Technique. Journal of
Iltar S, Uysal M, Alemdaroglu KB, Aydogan NH, Kara T,
Atlihan D (2010). Treatment of Clubfoot with the Ponseti
Method: Should we Begin Casting in the Newborn Period
or Later? The Journal of Foot and Ankle Surgery. 49; 426-431.
Ippolito E, Farsetti P, Caterini R, Tudisco C (2003). LongTerm Comparative Results in Patients with Congenital
Clubfoot Treated with Two Different Protocols. The Journal
of Bone and Joint Surgery. 85-A (7) 1286-1294.
Bone and Joint Surgery (Br). 93-B; 700-4
Ponseti method. A Systematic Review. Journal of Bone and
Joint Surgery Br, 93-B; 1160-4.
Karol LA, Jeans K, ElHarawary R (2009). Gait Analysis
after Initial Nonoperative Treatment for Clubfeet. Clinical
Khan SA, Kumar A (2010). Ponseti’s manipulation in
neglected clubfoot in children more than 7 years of age: a
prospective evaluation of 25 feet with long-term followup. Journal of Pediatric Orthopaedics B. 19; 385-9.
Treatment of Congenital Clubfoot. The Journal of Bone and
Joint Surgery. 62-A (1) 23-31.
Narasimhan R, Bhat P (2011). Modified Ponseti technique
of management of idiopathic clubfoot. Apollo Medicine. 8
(4) 281-6.
Panjavi B, Sharafatvaziri A, Zargarbashi RH, Mehrpour S
(2012). Use of the Ponseti Method in the Iranian
Population. Journal of Pediatric Orthopaedics. 32 (3) 11-14.
250-3.
Related Research. 467; 1133-1145. Reprint of Original. (1963)
Journal of Bone and Joint Surgery Am; 45; 261-344)
Ramirez N, Flynn JM, Fernandez S, Seda W, Macchiavelli
RE (2011). Orthosis Noncompliance After the Ponseti
Method for the Treatment of Idiopathic Clubfeet: A
Relevant Problem That Needs Re-evaluation. Journal of
Pediatric Orthopaedics 31 (6) 710-5.
Rijal R, Shrestha BP, Singh GK, Nepal P, Khanal GP, Rai P
(2010). Comparison of Ponseti and Kite’s method of
treatment for idiopathic clubfoot. Indian Journal of
Orthopaedics. 44 (2) 202-7.
foot deformity. The Journal of Bone and Joint Surgery. 88-B
(8) 1085-9.
Sud A, Tiwari A, Sharma D, Kapoor S (2008). Ponseti’s vs.
Kite’s method in the treatment of clubfoot-a prospective
randomised study. International Orthopaedics. 32; 409-413.
Thacker MM, Scher DM, Sala D, P van Bosse HJ, Feldman
DS, Lehman WB (2005). Use of the Foot Abduction
Orthosis Following Ponseti Casts. Is it Essential? Journal of
Verma A, Mehtani A, Sural S, Maini L, Gautam VK,
Basran SS, Arora S (2011). Management of idiopathic
clubfoot in toddlers by Ponseti’s method. Journal of
Willis RB, Al-Hunaishel M, Guerra L, Kontio K (2009).
What Proportion of Patients Need Extensive Surgery After
Failure of the Ponseti Technique for Clubfoot. Clinical
Xu RJ (2011). A Modified Ponseti Method for the
Treatment of Idiopathic Clubfoot: A Preliminary Report.
Journal of Pediatric Orthopaedics, 31 (3) 317-9.
Yapp LZ, Arnold GP, Nasir S, Wang W, Maclean JGB,
Abboud RJ (2012). Assessment of talipes equinovarus
treated by Ponseti technique: Three-year preliminary
report. The Foot. Article in press,
doi:10,1016/j.foot.2012.01.001
Zhang W, Richards BS, Faulks ST, Karol LA, Rathjen KA,
Browne RH (2011). Initial severity rating of idiopathic
clubfeet is an outcome predictor at age two years. Journal
of Pediatric Orthopaedics B. 21; 16-19.
Zwick EB, Kraus T, Maizen C, Steinwender G, Linhart WE
(2009). Comparison of Ponseti versus Surgical Treatment
for Idiopathic Clubfoot. Clinical Orthopaedics Related
Research. 467; 2668-2676.
Sanghvi AV, Mittal VK (2009). Conservative management
of idiopathic clubfoot: Kite versus Ponseti method. Journal
of Orthopaedic Surgery. 17 (1) 67-71.
Scher DM. (2005). The Ponseti Method for Clubfoot
Correction. Operative Techniques in Orthopaedics. 15; 345-9.
43
Appendix 1 : Summary of articles from literature search
44
Study type
Evidence grade*
Numbers
Outcomes
Results
Discussion/Critical Appraisal/
Limitations
(for some papers)
Abbas et al, 2008
Management of Congenital
Talipes Equinovarus by Ponseti
Technique: A Clinical Study
Case control study
Level 5
100 patients (156 clubfeet)
Compared to results with other
manipulation techniques and surgical
treatment reported in the literature,
Pirani score; mean foot print
angle.
Post correction with Ponseti
method there was a significant
difference in the mean foot print
angle (P<.001) and the Pirani score
(P<.001).
In 95% of the patients correction
of the deformity as achieved.
Photographs as outcomes.
Abdelgawad et al, 2007
Treatment of idiopathic clubfoot
using the Ponseti method:
minimum 2-year follow-up.
Case series
Level 7
137 idiopathic clubfeet treated with
Ponseti method followed up fir at
least 2 years
Modified Dimeglio/Bensahel
score; Catterall/Pirani score.
Age at initial treatment; number
of casts; compliance with FAO;
further treatment required.
9 feet (7%) not corrected with
initial casting and required early
surgery.
Group compliant with FAO
statistically significant difference
in Demeglio Bansahel and
Catterall Pirani scores at 2 years
follow up.
Alves et al, 2009
Ponseti Method. Does Age at the
Beginning of Treatment Make a
Difference?
Retrospective cohort
Level 4
68 consecutive children (102
idiopathic clubfeet) treated with
Ponseti method.
General 30 month follow-up
of two groups; Group 1; those
starting treatment under 6 months
of age. Group 2; those starting
over 6 months of age.
No differences between groups
1 and 2 in the number of casts,
tenotomise, success in terms
of initial correction, rate of
recurrence, and rate of tibialis
anterior transference.
Aurell et al, 2005
Ultrasound assessment of early
clubfoot treatment: a comparison
of the Ponseti method and a
modified Copenhagen method.
Cohort study
Level 4
9 clubfeet in Ponseti group – Group A
19 clubfeet treated with adjustable
plexidur splint – Copenhagen method
– Group B
Sonographic comparisons, need
for further surgery.
After 2 months on non-surgical–
correction at the talo-navicular
joint, significantly greater in
group A.
After surgery; tenotomy (A)
Posteromedial release (B)
and calcaneo-cuboid joints was
similar for the two groups.
Brewster et al, 2008
Ponseti casting. A new soft option.
Case control Study
Level 5
51 consecutive babies with 80
idiopathic club feet
Mean time of weekly casting to
Achilles tenotomy. Mean time
from tenotomy to boots
Mean of 8.5 weeks casting; 20 feet
not requiring tenotomy; mean
time tenotomy to boots 3.3 weeks
Bor & Herzenberg, 2009
Treatment for Idiopathic Clubfoot.
Minimum 5-year Follow-up.
Large case report
Level 7
74 consecutive infants (117) clubfeet.
Age at presentation, previous
treatment, the initial severity score
of Pirani, number of casts, need
for Achilles tenotomy or other
surgical procedures and brace use.
Late presentation and previous
non-Ponseti treatment associated
with lower initial severity
scores, fewer cats and less need
for tenotomy. Good brace use
predicted less need for extensive
surgical procedures.
Chaudhry et al, 2011
P
i
f idi
thi
Case series
L
l7
123 patients (185 feet) treated with
P
ti
th d
db
b
Dimeglio/Bensahel classification
t
Successive casting achieved goals
f d i
d
di l
Progression of idiopathic clubfoot
correction using the Ponseti
method.
Case series
Level 7
Ponseti method grouped by number
of casts required.
system.
of reducing cavus and medial
crease first, then gradually
correcting midfoot rotation,
adduction, and heel varus
Achilles tenotomy performed
in 58% of clubfeet (107 feet),
increasing with number of casts
applied, to 100% in the group
requiring 8 casts.
Chotel et al, 2011
Comparative Study: Ponseti
Method Versus French
Physiotherapy for Initial
Treatment of Idiopathic Clubfoot
Deformity.
Cohort study
Level 4
219 idiopathic clubfeet (146 patients).
116 treated with French Method;
103 treated with Ponseti Method.
Use of further surgery.
Complete posteromedial release
considered poor; limited posterior
release – fair; non-release surgery
or non-operated feet – scored with
modified Ghanem score
Results for Dimeglio grade II
clubfeet were not different,
but results for grade III and IV
clubfeet were better in the Ponseti
Method Group.
Clarke et al, 2011
Comparison of Ponseti Versus
Surgical Treatment in Congenital
Talipes Equinovarus.
Cohort Study
Level 4
Rate of relapse – all cases
requiring recasting or additional
operative procedures.
No significant difference found
for relapse rate in the Ponseti
compared to 2-stage operative
treatment.
Retrospective study, small
sample size, unable to determine
statistical significance in
outcome of relapses.
Colburn & Williams, 2003
Evaluation of the Treatment of
Idiopathic Clubfoot by Using the
Ponseti Method.
Case series
Level 7
34 infants (57 clubfeet)
Dimeglio score; relapse rate; FAO
compliance
54 of 57 clubfeet successfully
corrected without requiring
posteromedial release.
6 patients suffered a relapse
despite initial correction – all noncomplaint with FAO.
Subjective outcomes only
Cosma et al, 2007
Comparative results of the
conservative treatment in clubfoot
by two different protocols.
Cohort study
Level 4
103 children (148 clubfeet)
52 children (74 feet) treated with
Romanian method
Ponseti Method.
Number of casts
Duration of treatment
Need for posteromedial release
No significant difference
Favoured Ponseti group
Favoured Ponseti groups
(P=0.019)
Dobbs et al, 2004
Factors Predictive of Outcome
after use of the Ponseti Method
for the Treatment of Idiopathic
Clubfeet.
Cross sectional survey
Level 6
51 consecutive cases (86 idiopathic
clubfeet) examined retrospectively.
Patient characteristics at time of
presentation and demographic
data.
Noncompliance with orthotic use
most related to risk of recurrence.
Parental education also significant
factor. No significant relationship
with other factors studies.
Farsetti et al, 2009
CT Study on the Effect of Different
Treatment Protocols for Clubfoot
Pathology.
Cohort study
Level 4
47 clubfeet – traditional protocol
61 clubfeet – Ponseti method
CT images and angles
The Ponseti method produced
better anatomical results in
comparison to the traditional
technique.
Faulks & Richards, 2009
Clubfoot Treatment. Ponseti and
French Functional Methods are
Equally Effective.
Review / Case series
Level 7
267 feet (176 patients) in Ponseti
group
119 feet (80 patients) in French group
Overall outcomes, gait analysis
Good outcomes in 72% of the
Ponseti group and 67% of the
French group.
Gait analysis – no difference
between the two groups
l bf
t
Groups ‘similar’ initially. Same
protocol applied to all.
No statistical analysis, vague
conclusions drawn
Valid scoring system used.
Feet classified into 4 groups
for severity, all patient
characteristics analysed
statistically with 95% confidence
interval.
Small number of patients in sub
groups. Orthosis used based on
parental report.
45
Study
Appendix 1 : Summary of articles from literature search
44
Study type
Evidence grade*
Numbers
Outcomes
Results
Discussion/Critical Appraisal/
Limitations
(for some papers)
Abbas et al, 2008
Management of Congenital
Talipes Equinovarus by Ponseti
Technique: A Clinical Study
Case control study
Level 5
Compared to results with other
manipulation techniques and surgical
treatment reported in the literature,
Pirani score; mean foot print
angle.
Post correction with Ponseti
method there was a significant
difference in the mean foot print
angle (P<.001) and the Pirani score
(P<.001).
In 95% of the patients correction
of the deformity as achieved.
Photographs as outcomes.
Abdelgawad et al, 2007
Treatment of idiopathic clubfoot
using the Ponseti method:
minimum 2-year follow-up.
Case series
Level 7
Ponseti method followed up fir at
least 2 years
Modified Dimeglio/Bensahel
score; Catterall/Pirani score.
Age at initial treatment; number
of casts; compliance with FAO;
further treatment required.
9 feet (7%) not corrected with
initial casting and required early
surgery.
Group compliant with FAO
statistically significant difference
in Demeglio Bansahel and
Catterall Pirani scores at 2 years
follow up.
Alves et al, 2009
Ponseti Method. Does Age at the
Beginning of Treatment Make a
Difference?
Level 4
68 consecutive children (102
idiopathic clubfeet) treated with
Ponseti method.
General 30 month follow-up
of two groups; Group 1; those
starting treatment under 6 months
of age. Group 2; those starting
over 6 months of age.
No differences between groups
1 and 2 in the number of casts,
tenotomise, success in terms
of initial correction, rate of
recurrence, and rate of tibialis
anterior transference.
Aurell et al, 2005
Ultrasound assessment of early
clubfoot treatment: a comparison
of the Ponseti method and a
modified Copenhagen method.
Cohort study
Level 4
9 clubfeet in Ponseti group – Group A
19 clubfeet treated with adjustable
plexidur splint – Copenhagen method
– Group B
Sonographic comparisons, need
for further surgery.
After 2 months on non-surgical–
joint, significantly greater in
group A.
After surgery; tenotomy (A)
Posteromedial release (B)
and calcaneo-cuboid joints was
similar for the two groups.
Brewster et al, 2008
Ponseti casting. A new soft option.
Case control Study
Level 5
51 consecutive babies with 80
idiopathic club feet
Mean time of weekly casting to
Achilles tenotomy. Mean time
from tenotomy to boots
Mean of 8.5 weeks casting; 20 feet
not requiring tenotomy; mean
time tenotomy to boots 3.3 weeks
Bor & Herzenberg, 2009
Treatment for Idiopathic Clubfoot.
Minimum 5-year Follow-up.
Large case report
Level 7
74 consecutive infants (117) clubfeet.
Age at presentation, previous
treatment, the initial severity score
of Pirani, number of casts, need
for Achilles tenotomy or other
surgical procedures and brace use.
Late presentation and previous
non-Ponseti treatment associated
with lower initial severity
scores, fewer cats and less need
for tenotomy. Good brace use
predicted less need for extensive
surgical procedures.
P
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Case series
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Progression of idiopathic clubfoot
correction using the Ponseti
method.
Case series
Level 7
Ponseti method grouped by number
of casts required.
system.
of reducing cavus and medial
crease first, then gradually
correcting midfoot rotation,
adduction, and heel varus
Achilles tenotomy performed
in 58% of clubfeet (107 feet),
increasing with number of casts
applied, to 100% in the group
requiring 8 casts.
Chotel et al, 2011
Comparative Study: Ponseti
Method Versus French
Physiotherapy for Initial
Treatment of Idiopathic Clubfoot
Deformity.
Cohort study
Level 4
219 idiopathic clubfeet (146 patients).
116 treated with French Method;
103 treated with Ponseti Method.
Use of further surgery.
Complete posteromedial release
considered poor; limited posterior
release – fair; non-release surgery
or non-operated feet – scored with
modified Ghanem score
Results for Dimeglio grade II
clubfeet were not different,
but results for grade III and IV
clubfeet were better in the Ponseti
Method Group.
Clarke et al, 2011
Comparison of Ponseti Versus
Surgical Treatment in Congenital
Talipes Equinovarus.
Cohort Study
Level 4
Rate of relapse – all cases
requiring recasting or additional
operative procedures.
No significant difference found
for relapse rate in the Ponseti
compared to 2-stage operative
treatment.
Retrospective study, small
sample size, unable to determine
statistical significance in
outcome of relapses.
Colburn & Williams, 2003
Evaluation of the Treatment of
Idiopathic Clubfoot by Using the
Ponseti Method.
Case series
Level 7
34 infants (57 clubfeet)
Dimeglio score; relapse rate; FAO
compliance
54 of 57 clubfeet successfully
corrected without requiring
posteromedial release.
6 patients suffered a relapse
despite initial correction – all noncomplaint with FAO.
Subjective outcomes only
Cosma et al, 2007
Comparative results of the
conservative treatment in clubfoot
by two different protocols.
Cohort study
Level 4
103 children (148 clubfeet)
Romanian method
Ponseti Method.
Number of casts
Duration of treatment
Need for posteromedial release
No significant difference
Favoured Ponseti group
Favoured Ponseti groups
(P=0.019)
Dobbs et al, 2004
Factors Predictive of Outcome
after use of the Ponseti Method
Clubfeet.
Cross sectional survey
Level 6
51 consecutive cases (86 idiopathic
clubfeet) examined retrospectively.
Patient characteristics at time of
presentation and demographic
data.
Noncompliance with orthotic use
most related to risk of recurrence.
Parental education also significant
factor. No significant relationship
with other factors studies.
Farsetti et al, 2009
CT Study on the Effect of Different
Treatment Protocols for Clubfoot
Pathology.
Cohort study
Level 4
47 clubfeet – traditional protocol
61 clubfeet – Ponseti method
CT images and angles
The Ponseti method produced
better anatomical results in
comparison to the traditional
technique.
Faulks & Richards, 2009
Clubfoot Treatment. Ponseti and
French Functional Methods are
Equally Effective.
Review / Case series
Level 7
267 feet (176 patients) in Ponseti
group
119 feet (80 patients) in French group
Overall outcomes, gait analysis
Good outcomes in 72% of the
Ponseti group and 67% of the
French group.
Gait analysis – no difference
between the two groups
l bf
t
Groups ‘similar’ initially. Same
protocol applied to all.
No statistical analysis, vague
conclusions drawn
Valid scoring system used.
Feet classified into 4 groups
for severity, all patient
characteristics analysed
statistically with 95% confidence
interval.
Small number of patients in sub
groups. Orthosis used based on
parental report.
45
Study
46
27 children (35 idiopathic clubfeet)
Recurrence (the need for further
casting or operation)
The recurrence rates in patients
using UFAO were higher
compared to those reported by
others using DBB after Ponseti
method.
Goksan et al, 2006
Ponseti technique for the
correction of idiopathic clubfeet
presenting up to 1 year of age. A
preliminary study in children with
untreated or complex deformities.
Case series
Level 7
134 feet (92 patients) with Demeglio
grade 2, 3 or 4 deformities treated
with Ponseti method.
Avoidance of surgery, tenotomy
rate, relapse rate, compliance with
orthosis
Joint release surgery avoided in
97% of feet.
Tenotomy required in 67% of feet.
Relapse rate was 31%. Compliance
with orthosis identified as the
most important risk factor
(p<0.0001) for relapse rate.
Gottschalk et al, 2010
Gait Analysis of Children Treated
for Moderate Clubfoot with
Physical Therapy Versus the
Ponseti Cast Technique.
Cohort Study
Level 4
40 moderate clubfeet (33 patients)
17 feet – Ponseti group
23 feet – French physical therapy
method
Gait analysis parameters
Normal ankle motion documented
more frequently in the Ponseti
group.
Harnett et al, 2011
An accelerated Ponseti versus the
standard Ponseti method.
RCT
Level 2/3
40 patients (61 feet)
Initial and final Pirani scores;
number of days in plaster.
There was no significant
differences in the final Pirani score
between the groups (P=0.308)
The median number of treatment
days in plaster was 16 in the
accelerated group and 42 in the
control group (p<0.001)
Herzenberg et al, 2002
Ponseti Versus Traditional
Methods of Casting for Idiopathic
Clubfoot
Case control
Level 5
27 patients (34 feet) undergoing
Ponseti method.
Control: 27 matched patients (34 feet)
with previous traditional method.
Need to perform Posterior medial
release (PMR) in the first year of
life.
Ponseti group: 1% of 34 feet
required PMR
Traditional group: 94% (32 feet)
required PMR
Iltar et al, 2010
Treatment of Clubfoot with the
Ponseti Method: Should we Begin
Casting in the Newborn Period or
Later?
Cohort Study
Level 4
40 clubfeet in 29 consecutive infants
Pirani and Demeglio scores after
casting initiated in newborn
period or later
Final Demeglio scores
significantly worse in those with
casting applied in newborn period
compared to later.
Ippolito et al, 2003
Long-Term Comparative Results
in Patients with Congenital
Clubfoot Treated with Two
Different Protocols.
Cohort Study
Level 4
32 patients (47 clubfeet) treated with
‘traditional technique.
Ponseti method
Patient interview; radiographs and
CT scans of feet. Laaveg & Ponseti
grading
Mean rating in traditional group
74.7
Mean rating in Ponseti group 85.4
Janicki et al, 2011
A comparison of ankle foot
orthoses with foot abduction
orthoses to prevent recurrence
following correction of idiopathic
clubfoot by the Ponseti method.
Cohort study
Level 4
45 children (69 idiopathic clubfeet
treated with Ponseti method.)
17 (30 clubfeet) braced with ankle foot
orthoses (AFO)
28 (39 clubfeet) braced with Denis
Browne boots and bar.
Recurrence requiring additional
treatment.
Recurrence occurred in 25 of 80
(83%) of the AFO group and in 12
of 39 (31%) of the boots and bar
group (p<0.001)
FAO group older at time of
treatment and more required
tenotomy, so differences in
groups at presentation should in
theory favour AFO group.
Jowett et al, 2011
Management of congenital talipes
h
Systematic Review
Level 1
74 full text articles reviewed.
Aims to assess the method and
effects of modifications to the
h d
d
Ponseti method provides excellent
results with initial correction, nonl
hb
Clear population group,
thorough database search,
d d
Jowett et al, 2011
equinovarus using the Ponseti
method. A Systematic Review.
Systematic Review
Level 1
Ponseti method, and compare
with similar methods
results with initial correction, noncompliance with bracing most
common cause of relapse.
standard scoring system – interrater agreement
Only English papers included,
no statistical analysis/
interpretation, possibility of
author bias, subjective removal
of studies with ‘not enough
data’.
Karol et al, 2009
Gait Analysis after Initial Nonoperative Treatment for Clubfeet.
Cohort Study
Level 4
125 clubfeet (90 patients)
34 feet – Ponseti method
40 feet – French method
51 feet initial non-operative followed
by surgery
Gait analysis characteristics
compared to age-matches normal
control subjects
Gait characteristics of feet that did
not have surgery and maintained
correction were superior to those
of operated feet.
Khan & Kumar, 2010
Ponseti’s manipulation in
neglected clubfoot in children
more than 7 years of age: a
prospective evaluation of 25 feet
with long-term follow-up.
Case series
Level 7
21 children (25 feet) with neglected
clubfoot over the age of 7 years.
Dimeglio scoring; age at treatment;
clubfoot severity.
18 feet (85.7%) had full correction
after treatment.
Recurrence seen in 6 feet (24%)
At 4 year follow-up, the average
Dimeglio score for 19 feet was
0.18.
Laaveg & Ponseti, 1980
Long-term Results of Treatment of
Congenital Clubfoot.
Cross sectional study
Level 6
Ponseti followed up for 10-27 years
Functional rating system scores
88.5 % of the feet had satisfactory
rating scores and 90% of the
patients satisfied with the
appearance and function of the
clubfoot.
Functional rating score well
described.
Relies heavily on patient
subjective response, possibility
of author bias to own method
Narasimhan & Bhat, 2011
Modified Ponseti technique
of management of idiopathic
clubfoot.
Case Series
Level 7
21 children with idiopathic clubfoot
(33 feet: 12 bilateral, 9 unilateral)
treated with a modified technique
Clinical and radiological followup
Good results (Pirani score 0) in 16
children, fair (Pirani score 1-3) in
3, and poor results (Pirani score
>3) in terms of loss of correction
in 2 cases.
Author measurements
may introduce bias to own
modifications
Panjavi et al, 2012
Use of the Ponseti Method in the
Iranian Population.
Case series
Level 7
Ponseti method
Relapse rate; number of casts;
compliance with bracing;
educational level of parents.
24 (18.6%) clubfeet relapsed
rate. Significant association
of recurrence with severity of
clubfeet, number of casts for
complete correction, and bracing
noncompliance.
Pittner et al, 2008
Ponseti Method. A comparison of
casting materials.
RCT
Level 2/3
13 patients (16 feet) received
fibreglass
18 patients (23 feet) received plaster
casts
Final clubfoot severity score
The mean final severity score was
significantly higher in the feet
treated with fibreglass (p=0.037)
No long term outcomes
documented.
Ponseti & Smoley, 2009
The Classic. Congenital Club Foot:
The Results of Treatment.
Level 6
67 patients (94 clubfeet) treatment
results evaluated 5-13 years after
treatment
Functional rating score and
outcomes
Good results in 71% of the feet
and acceptable in 28%.
In 53 feet – deformity returned
and required further treatment
Homogeneity of group unclear,
No clear definition of good
outcome, no statistical analysis,
possibility of author bias to own
method
No long term follow-up.
Statistical differences only in
Dimeglio/Pirani scores.
Case series report
Level 7
47
George et al, 2011
Unilateral foot abduction orthosis:
is it a substitute for Denis
Browne boots following Ponseti
technique?
46
27 children (35 idiopathic clubfeet)
Recurrence (the need for further
casting or operation)
The recurrence rates in patients
using UFAO were higher
compared to those reported by
others using DBB after Ponseti
method.
Goksan et al, 2006
Ponseti technique for the
correction of idiopathic clubfeet
presenting up to 1 year of age. A
preliminary study in children with
untreated or complex deformities.
Case series
Level 7
134 feet (92 patients) with Demeglio
grade 2, 3 or 4 deformities treated
with Ponseti method.
Avoidance of surgery, tenotomy
rate, relapse rate, compliance with
orthosis
Joint release surgery avoided in
97% of feet.
Tenotomy required in 67% of feet.
Relapse rate was 31%. Compliance
with orthosis identified as the
most important risk factor
(p<0.0001) for relapse rate.
Gottschalk et al, 2010
Gait Analysis of Children Treated
for Moderate Clubfoot with
Physical Therapy Versus the
Ponseti Cast Technique.
Cohort Study
Level 4
40 moderate clubfeet (33 patients)
23 feet – French physical therapy
method
Gait analysis parameters
Normal ankle motion documented
more frequently in the Ponseti
group.
Harnett et al, 2011
An accelerated Ponseti versus the
standard Ponseti method.
RCT
Level 2/3
40 patients (61 feet)
Initial and final Pirani scores;
number of days in plaster.
There was no significant
differences in the final Pirani score
between the groups (P=0.308)
The median number of treatment
days in plaster was 16 in the
accelerated group and 42 in the
control group (p<0.001)
Herzenberg et al, 2002
Ponseti Versus Traditional
Methods of Casting for Idiopathic
Clubfoot
Case control
Level 5
27 patients (34 feet) undergoing
Ponseti method.
Control: 27 matched patients (34 feet)
with previous traditional method.
Need to perform Posterior medial
release (PMR) in the first year of
life.
Ponseti group: 1% of 34 feet
required PMR
Traditional group: 94% (32 feet)
required PMR
Iltar et al, 2010
Ponseti Method: Should we Begin
Casting in the Newborn Period or
Later?
Cohort Study
Level 4
40 clubfeet in 29 consecutive infants
Pirani and Demeglio scores after
casting initiated in newborn
period or later
Final Demeglio scores
significantly worse in those with
casting applied in newborn period
compared to later.
Ippolito et al, 2003
Long-Term Comparative Results
in Patients with Congenital
Clubfoot Treated with Two
Different Protocols.
Cohort Study
Level 4
‘traditional technique.
Ponseti method
Patient interview; radiographs and
CT scans of feet. Laaveg & Ponseti
grading
Mean rating in traditional group
74.7
Mean rating in Ponseti group 85.4
Janicki et al, 2011
A comparison of ankle foot
orthoses with foot abduction
orthoses to prevent recurrence
following correction of idiopathic
clubfoot by the Ponseti method.
Cohort study
Level 4
45 children (69 idiopathic clubfeet
treated with Ponseti method.)
17 (30 clubfeet) braced with ankle foot
orthoses (AFO)
28 (39 clubfeet) braced with Denis
Browne boots and bar.
Recurrence requiring additional
treatment.
Recurrence occurred in 25 of 80
(83%) of the AFO group and in 12
of 39 (31%) of the boots and bar
group (p<0.001)
FAO group older at time of
treatment and more required
tenotomy, so differences in
groups at presentation should in
theory favour AFO group.
Jowett et al, 2011
h
Systematic Review
Level 1
h d
d
results with initial correction, nonl
hb
d d
Jowett et al, 2011
equinovarus using the Ponseti
method. A Systematic Review.
Systematic Review
Level 1
Ponseti method, and compare
with similar methods
results with initial correction, noncompliance with bracing most
common cause of relapse.
standard scoring system – interrater agreement
Only English papers included,
no statistical analysis/
interpretation, possibility of
author bias, subjective removal
of studies with ‘not enough
data’.
Karol et al, 2009
Gait Analysis after Initial Nonoperative Treatment for Clubfeet.
Cohort Study
Level 4
125 clubfeet (90 patients)
34 feet – Ponseti method
40 feet – French method
51 feet initial non-operative followed
by surgery
Gait analysis characteristics
compared to age-matches normal
control subjects
Gait characteristics of feet that did
not have surgery and maintained
correction were superior to those
of operated feet.
Khan & Kumar, 2010
Ponseti’s manipulation in
neglected clubfoot in children
more than 7 years of age: a
prospective evaluation of 25 feet
with long-term follow-up.
Case series
Level 7
21 children (25 feet) with neglected
clubfoot over the age of 7 years.
Dimeglio scoring; age at treatment;
clubfoot severity.
18 feet (85.7%) had full correction
after treatment.
Recurrence seen in 6 feet (24%)
At 4 year follow-up, the average
Dimeglio score for 19 feet was
0.18.
Laaveg & Ponseti, 1980
Long-term Results of Treatment of
Congenital Clubfoot.
Level 6
Ponseti followed up for 10-27 years
Functional rating system scores
88.5 % of the feet had satisfactory
rating scores and 90% of the
patients satisfied with the
appearance and function of the
clubfoot.
Functional rating score well
described.
Relies heavily on patient
subjective response, possibility
of author bias to own method
Narasimhan & Bhat, 2011
Modified Ponseti technique
of management of idiopathic
clubfoot.
Case Series
Level 7
21 children with idiopathic clubfoot
(33 feet: 12 bilateral, 9 unilateral)
treated with a modified technique
Clinical and radiological followup
Good results (Pirani score 0) in 16
children, fair (Pirani score 1-3) in
3, and poor results (Pirani score
>3) in terms of loss of correction
in 2 cases.
Author measurements
may introduce bias to own
modifications
Panjavi et al, 2012
Use of the Ponseti Method in the
Iranian Population.
Case series
Level 7
Ponseti method
Relapse rate; number of casts;
compliance with bracing;
educational level of parents.
24 (18.6%) clubfeet relapsed
rate. Significant association
of recurrence with severity of
clubfeet, number of casts for
complete correction, and bracing
noncompliance.
Pittner et al, 2008
Ponseti Method. A comparison of
casting materials.
RCT
Level 2/3
13 patients (16 feet) received
fibreglass
18 patients (23 feet) received plaster
casts
Final clubfoot severity score
The mean final severity score was
significantly higher in the feet
treated with fibreglass (p=0.037)
No long term outcomes
documented.
Ponseti & Smoley, 2009
The Classic. Congenital Club Foot:
The Results of Treatment.
Level 6
67 patients (94 clubfeet) treatment
results evaluated 5-13 years after
treatment
Functional rating score and
outcomes
Good results in 71% of the feet
and acceptable in 28%.
In 53 feet – deformity returned
and required further treatment
Homogeneity of group unclear,
No clear definition of good
outcome, no statistical analysis,
possibility of author bias to own
method
Statistical differences only in
Dimeglio/Pirani scores.
Case series report
Level 7
47
George et al, 2011
Unilateral foot abduction orthosis:
is it a substitute for Denis
Browne boots following Ponseti
technique?
48
53 patients (73 idiopathic TEV feet)
Deterioration of Dimeglio score
requiring re-manipulation
and casting was considered
reoccurrence
Non-compliance with the
orthotic use showed a significant
correlation with the recurrence
rate.
Subjective reporting of orthosis
use, patients evaluated by 3
different orthopaedic surgeons,
no clear consensus on definition
of relapse/recurrence.
Sanghvi & Mittal, 2009
Conservative management of
idiopathic clubfoot: Kite versus
Ponseti method.
RCT
Level 2/3
42 patients (64 idiopathic clubfeet)
34 clubfeet – Kite method
30 clubfeet – Ponseti group
Success rates for correction;
number of casts; duration
of casting; maximum ankle
dorsiflexion; incidence of residual
deformity and recurrence.
Ponseti: fewer casts (P=0.013),
shorter duration of treatment
(p=0.018) and achieved greater
dorsiflexion (P=0.037) than Kite
method.
How patients randomised not
clear
Unclear of assessors blind to
treatment groups
Shack & Eastwood, 2006
Early Results of a Physiotherapistdelivered Ponseti service for
the management of idiopathic
congenital talipes equinovarus
foot deformity.
Case series
Level 7
24 children (40 feet) with idiopathic
CTEV
Foot correction, failures, function,
relapses, radiological assessment,
patient satisfaction.
Feet corrected with mean of 5
casts
At follow-up (mean 20.3 months)
the median Pirani score was 0.5.
85% of families gave a satisfaction
rating of very high or high.
Sud et al, 2008
Ponseti’s vs. Kite’s method
in the treatment of clubfoot-a
prospective randomised study.
RCT
Level 2/3
45 patients (67 feet).
31 feet – Kite method
Rate of correction ; relapse rates;
need for surgery;
Rate of correction significantly
higher in the Ponseti group
(p,0.001)
Difference in the percentage of
relapse rates not statistically
significant (p>0.05)
Further surgery – 2 in Ponseti
group, 10 in Kite group.
Clear population sample,
assessment by ‘blind’ assessor,
intention to treat follow-up.
Randomised by alternate
allocation – not truly ‘random’
No power calculations for
sample size.
Thacker et al, 2005
Use of the Foot Abduction
Orthosis Following Ponseti Casts.
Is it Essential?
Cohort study
Level 4
Ponseti – classified as compliant or
non-compliant with foot abduction
orthoses (FAO)
Dimeglio and Pirani scoring
systems at initial presentation,
time of FAO application and 6-9
month follow-up
At follow-up, the compliant
group’s scores were significantly
(P<0.01) better than those in the
noncompliant group.
Short term follow-up, subjective
reporting.
Verma et al, 2011
Management of idiopathic
clubfoot in toddlers by Ponseti’s
method.
Level 6
55 clubfeet (37 patients) aged between
12-36 months at initial treatment with
Ponseti method.
Pirani score; number of casts;
outcomes
Full correction of cavus, forefoot
adduction and varus deformity
in 33 patients (49 feet); those not
corrected all from age 2-3 year’s
group.
Lesser number of casts required
for younger patients.
Clinically, 89.1% feet (49 feet)
achieved satisfactory outcome.
Willis et al, 2009
What Proportion of Patients Need
Extensive Surgery After Failure
of the Ponseti Technique for
Clubfoot.
Retrospective case series.
Level 7
clubfoot treated with Ponseti method.
Median age at treatment; followup time; success of treatment with
full correction; recurrence rate;
compliance with bracing.
Median age at treatment 2 weeks
(95% confidence limit, 1-2 weeks)
Correction achieved and
maintained in 90% (65 0f 72) of
the feet.
Patients who tolerated bracing
had lower recurrence rates and
underwent less surgery.
Xu, 2011
A Modified Ponseti Method
Clubfoot: A Preliminary Report.
Cohort study
Level 4
treated with modified Ponseti method
twice a week.
treated with regular Ponseti method
once a week.
Rate of correction; number of casts;
tenotomy rate; Posteromedial
release requirement.
All aspects of deformity except
equinus corrected in 20.61 days
modified group and 35.35 days in
regular group.
No differences between average
number of casts required (P=.061)
Groups not randomised,
?difference in patient
demographics, clinical
measurements by author ?bias to own modification of
technique.
Yapp et al, 2012
Assessment of talipes equinovarus
treated by Ponseti technique:
Three-year preliminary report.
Case series
Level 7
5 children with CTEV followed up
yearly after treatment with Ponseti
method.
Clinical and functional
outcomes graded using parental
questionnaires and clinical
examination.
Biomechanical parameters using
digital foot pressure studies.
All recorded good clinical and
functional outcomes.
Biomechanical studies identified
subtle abnormalities.
Full outcomes.
Small sample size. Limited
information about FAO use.
Zhang et al, 2011
Initial severity rating of idiopathic
clubfeet is an outcome predictor at
age two years.
Cohort study
Level 4
479 idiopathic clubfeet (323 patients)
classified as; Moderate 86; severe 305;
very severe 88 by Demeglio score
Outcomes: Good (plantigrade
foot); Fair (limited surgery); Poor
(posteromedial release)
Significant correlation between
initial severity and outcomes; with
moderate better than severe and
severe better than very severe.
Zwick et al, 2009
Comparison of Ponseti versus
Surgical Treatment for Idiopathic
Clubfoot.
RCT
Level 2/3
19 patients (28 feet) total
9 patients (12 feet) were assigned to
the Ponseti group
10 patients (16 feet) assigned to the
group with initial casting and a
posteromedial release at 6-8 months
old.
Functional rating system of
Laaveg & Ponseti; paediatric
Outcomes data Collection
Instrument (PODCI) ;
standardised radiographic
measurements
Mean functional rating score
higher in the Ponseti group;
Passive dorsi-flexion and passive
inversion-eversion better in the
Ponseti group; PODCI scales and
radiographic outcome measures
similar across the two groups.
*Evidence levels based on hierarchy of research evidence from www.healthknowledge.org.uk
Randomisation table used,
power calculation used to
determine sample size, intention
to treat analysis used.
Unblinded assessment may
have introduced bias, decreased
power to reject null hypotheses
due to therapy group ceasing
patient acquisition early on.
Level 4
Ramirez et al, 2011
Orthosis Noncompliance After
the Ponseti Method for the
Treatment of Idiopathic Clubfeet:
A Relevant Problem That Needs
Re-evaluation.
49
48
53 patients (73 idiopathic TEV feet)
Deterioration of Dimeglio score
requiring re-manipulation
and casting was considered
reoccurrence
Non-compliance with the
orthotic use showed a significant
correlation with the recurrence
rate.
Subjective reporting of orthosis
use, patients evaluated by 3
different orthopaedic surgeons,
no clear consensus on definition
of relapse/recurrence.
Sanghvi & Mittal, 2009
Conservative management of
idiopathic clubfoot: Kite versus
Ponseti method.
RCT
Level 2/3
34 clubfeet – Kite method
30 clubfeet – Ponseti group
Success rates for correction;
number of casts; duration
of casting; maximum ankle
dorsiflexion; incidence of residual
deformity and recurrence.
Ponseti: fewer casts (P=0.013),
shorter duration of treatment
(p=0.018) and achieved greater
dorsiflexion (P=0.037) than Kite
method.
How patients randomised not
clear
Unclear of assessors blind to
treatment groups
Shack & Eastwood, 2006
Early Results of a Physiotherapistdelivered Ponseti service for
the management of idiopathic
congenital talipes equinovarus
foot deformity.
Case series
Level 7
CTEV
Foot correction, failures, function,
relapses, radiological assessment,
patient satisfaction.
Feet corrected with mean of 5
casts
At follow-up (mean 20.3 months)
the median Pirani score was 0.5.
85% of families gave a satisfaction
rating of very high or high.
Sud et al, 2008
Ponseti’s vs. Kite’s method
in the treatment of clubfoot-a
prospective randomised study.
RCT
Level 2/3
45 patients (67 feet).
31 feet – Kite method
Rate of correction ; relapse rates;
need for surgery;
Rate of correction significantly
higher in the Ponseti group
(p,0.001)
Difference in the percentage of
relapse rates not statistically
significant (p>0.05)
Further surgery – 2 in Ponseti
group, 10 in Kite group.
Clear population sample,
assessment by ‘blind’ assessor,
intention to treat follow-up.
Randomised by alternate
allocation – not truly ‘random’
No power calculations for
sample size.
Thacker et al, 2005
Use of the Foot Abduction
Orthosis Following Ponseti Casts.
Is it Essential?
Cohort study
Level 4
Ponseti – classified as compliant or
non-compliant with foot abduction
orthoses (FAO)
Dimeglio and Pirani scoring
systems at initial presentation,
time of FAO application and 6-9
month follow-up
At follow-up, the compliant
group’s scores were significantly
(P<0.01) better than those in the
noncompliant group.
Short term follow-up, subjective
reporting.
Verma et al, 2011
Management of idiopathic
clubfoot in toddlers by Ponseti’s
method.
Level 6
55 clubfeet (37 patients) aged between
12-36 months at initial treatment with
Ponseti method.
Pirani score; number of casts;
outcomes
Full correction of cavus, forefoot
adduction and varus deformity
in 33 patients (49 feet); those not
corrected all from age 2-3 year’s
group.
Lesser number of casts required
for younger patients.
Clinically, 89.1% feet (49 feet)
achieved satisfactory outcome.
Willis et al, 2009
What Proportion of Patients Need
Extensive Surgery After Failure
of the Ponseti Technique for
Clubfoot.
Retrospective case series.
Level 7
clubfoot treated with Ponseti method.
Median age at treatment; followup time; success of treatment with
full correction; recurrence rate;
compliance with bracing.
Median age at treatment 2 weeks
(95% confidence limit, 1-2 weeks)
Correction achieved and
maintained in 90% (65 0f 72) of
the feet.
Patients who tolerated bracing
had lower recurrence rates and
underwent less surgery.
Xu, 2011
A Modified Ponseti Method
Clubfoot: A Preliminary Report.
Cohort study
Level 4
treated with modified Ponseti method
twice a week.
treated with regular Ponseti method
once a week.
Rate of correction; number of casts;
tenotomy rate; Posteromedial
release requirement.
All aspects of deformity except
equinus corrected in 20.61 days
modified group and 35.35 days in
regular group.
No differences between average
number of casts required (P=.061)
Groups not randomised,
?difference in patient
demographics, clinical
measurements by author ?bias to own modification of
technique.
Yapp et al, 2012
Assessment of talipes equinovarus
treated by Ponseti technique:
Three-year preliminary report.
Case series
Level 7
5 children with CTEV followed up
yearly after treatment with Ponseti
method.
Clinical and functional
outcomes graded using parental
questionnaires and clinical
examination.
Biomechanical parameters using
digital foot pressure studies.
All recorded good clinical and
functional outcomes.
Biomechanical studies identified
subtle abnormalities.
Full outcomes.
Small sample size. Limited
information about FAO use.
Zhang et al, 2011
Initial severity rating of idiopathic
clubfeet is an outcome predictor at
age two years.
Cohort study
Level 4
479 idiopathic clubfeet (323 patients)
classified as; Moderate 86; severe 305;
very severe 88 by Demeglio score
Outcomes: Good (plantigrade
foot); Fair (limited surgery); Poor
(posteromedial release)
Significant correlation between
initial severity and outcomes; with
moderate better than severe and
severe better than very severe.
Zwick et al, 2009
Comparison of Ponseti versus
Surgical Treatment for Idiopathic
Clubfoot.
RCT
Level 2/3
19 patients (28 feet) total
9 patients (12 feet) were assigned to
the Ponseti group
10 patients (16 feet) assigned to the
group with initial casting and a
posteromedial release at 6-8 months
old.
Functional rating system of
Laaveg & Ponseti; paediatric
Outcomes data Collection
Instrument (PODCI) ;
standardised radiographic
measurements
Mean functional rating score
higher in the Ponseti group;
Passive dorsi-flexion and passive
inversion-eversion better in the
Ponseti group; PODCI scales and
radiographic outcome measures
similar across the two groups.
*Evidence levels based on hierarchy of research evidence from www.healthknowledge.org.uk
Randomisation table used,
power calculation used to
determine sample size, intention
to treat analysis used.
Unblinded assessment may
have introduced bias, decreased
power to reject null hypotheses
due to therapy group ceasing
patient acquisition early on.
Level 4
Ramirez et al, 2011
Orthosis Noncompliance After
the Ponseti Method for the
Treatment of Idiopathic Clubfeet:
A Relevant Problem That Needs
Re-evaluation.
49
Ponseti Method of Clubfoot Treatment for Physiotherapists: Putting the
Denise Watson MCSP
Author’s email: Denise.Watson@chelwest.nhs.uk
________________________________________________________________________________
Introduction
Congenital Talipes Equino Varus (CTEV) or clubfoot
is one of the most common musculo-skeletal
deformities present from birth occurring in 1.2/1000
live births in Europe (Wynne-Davis, 1964), but with
incidence differing widely across races (Carroll,
2011), (Global Clubfoot Initiative). Since the mid
1990’s there has been a move in preferred treatment,
from correction by complex surgical intervention, to
the Ponseti Method.
Ignacio Ponseti first described his technique of
manipulation, serial casting, achilles tendon
tenotomy and abduction bracing in 1963 (Ponseti
and Smoley, 1963) but the method was not widely
introduced until a series of papers looked at the long
term results of this method in the 1980’s-1990’s
(Laaveg and Ponseti, 1980; Cooper and Dietz, 1995).
The Ponseti method is now seen as the ‘Gold
Standard’ for clubfoot treatment and results have
been successfully reproduced throughout the world
(Lavy et al, 2007; Gul and Sandamban, 2007; Pirani et
al, 2009).
The author works in a designated physiotherapy led
Ponseti clubfoot service. In 2011-2012, 100 new
babies with structural clubfoot were treated with
approximately 50 children seen in the Ponseti clinics
each week.
In this review specific elements of the Ponseti
method are presented, which are especially relevant
to physiotherapists who work within teams
practicing the technique. It is based on the available
evidence as reviewed in the previous paper and the
experience of the Ponseti team at the author’s NHS
trust. Some variations in the method will also be
discussed.
Diagnosis
In the UK, many families receive their clubfoot
diagnosis at their anomaly scan at 16-20 weeks
gestation. There is much information available on
the internet with UK charities such as STEPS
50
(www.steps-charity.org.uk) supplying online advice
and support. Some families receive pre-natal
counselling but still a significant number of babies
are born with no ante-natal diagnosis (Radler et al,
2010) which can be confusing and traumatic for the
parents. Good recorded outcomes of the Ponseti
Method allow the health care professional to offer
some reassurance that most babies with primary
idiopathic clubfoot treated using the Ponseti Method
will achieve good results (Copper and Dietz, 1995).
Assessment / Scoring Systems and Outcome
Measures
The two most widely used scoring systems for
assessing the severity of clubfoot deformity are the
Pirani score and the Dimeglio score (Flynn et al,
1999; Dyer and Davis, 2006). The interobserver
reliability has been found to favour the Pirani
scoring system with a mean difference of 0.6 (out of
10)and 1.4 for the Dimeglio score (out of 20) with a
correlation coefficient of 0.90(p=0.0001) for the Pirani
score (Jowett et al, 2009).
The Pirani score is readily available and well
explained in the excellent Global-help free download
booklet ‘Clubfoot: Ponseti Management’
(www.global-help.org), and is widely used as a
training tool in instruction to new Clubfoot
practitioners learning to use the Ponseti Method.
The initial Pirani score has also been shown to be an
indicator for tenotomy (Dobbs et al, 2004) with an
initial score above 5 a reliable predictor for the need
for Achilles tendon tenotomy in order gain full
correction. A low score however ‘cannot exclude the
need for tenotomy’ (Dyer and Davis, 2006).
Later outcome measures, looking at patient
satisfaction and function have also been developed.
Cooper and Dietz (1995) use the Roye score to record
patient based outcomes in their 35 year follow up
study and the Child Health Questionnaire (CHQ)
has also been used to assess patient quality of life.
More complex assessment tools such as the Oxford
Ankle Foot Questionnaire for Children can also be
used which focuses on function and patient
satisfaction. Radiographs have been shown to be an
D.Watson / APCP Journal Volume 5 Number 1 (2014) 50-55
unreliable form of assessing outcome (Vitale et al,
2005).
Manipulation and Casting
Manipulation and casting can begin as soon as the
baby is born. In Ponseti’s original paper (Ponseti
and Smoley, 1963) all patients presented between 0-6
months of age. Alves et al (2009) showed no
difference in correction between those starting
treatment before or after 6 months of age. There is
much emerging evidence, particularly from
developing world projects, that a long delay in
treatment start does not necessarily preclude
correction, with case study reports of neglected
clubfoot in teenagers correcting using Ponseti
Method (www.walkforlife.org.au; Nogueira et al,
2009). Small numbers and lack of long term
outcomes mean that further research and audit are
required with this older group to assess their long
term outcome. A preferred approach would be to
wait until the baby is 2-3 weeks of age so that
feeding is more established and the mother is
recovered from the birth. This timescale does
however rely on a high percentage of prenatally
diagnosed families within the cohort. Not all babies,
however, receive treatment this early due to delays
in referral, particularly if prenatal diagnosis has not
been made.
Ponseti initially described a 7-day change of cast rate
(Ponseti and Smoley, 1963). Several studies have
looked at accelerated treatment regimes, with
Hartnett et al (2011) advocating changing the casts as
frequently as three times per week, with no
difference in correction rates. This may be a difficult
service to provide within most NHS clinics but could
be considered for families who are travelling long
distances, as in this study in Malawi. In Iowa,
Morcuende et al (2005) found a 5-day cast change
was as effective as a 7-day cast change. The number
of casts performed using long leg Plaster of Paris, as
advocated by Ignacio Ponseti (1996), prior to
tenotomy, has been reported by many different
teams. Rates vary from between three and nine
(Ponseti and Smoley, 1963; Laaveg and Ponseti, 1980;
Cooper and Dietz, 1995; Dyer and Davis 2006; Alves
et al, 2009). In view of these findings, the authors
suggest that more than ten casts should be seen as a
warning that the casting regime is not progressing.
At this stage it may be appropriate to re-evaluate the
initial diagnosis or seek a second opinion from a
more experienced Ponseti team. The average
number of casts prior to tenotomy at the author’s
centre is four.
Cast slips are a commonly reported problem during
the manipulation and casting stage and on occasions
post-tenotomy. The authors have not identified any
specific research related to long term outcomes in
children who have had cast slips, although
photographic evidence of swollen and sore feet
following slippage in casts is well reported in case
discussions at clubfoot conferences and many
failures to correct are attributed to inability to keep
casts on. (Figures 1a & 1b). From experience,
changing casts more than weekly can be an effective
way of avoiding cast slips
Figures 1a & 1b – Swollen and sore feet resulting from cast
slippage
Above knee vs below knee casts / casting material
There has been some discussion about the necessity
of above knee casts. The reasons for taking the casts
above knee are to ensure that the casts do not slip off
and to maintain full abduction of the subtalar joint
with full external rotation of the foot and ankle
(Ponseti, 1996).
Several centres have explored the ability to correct
the foot using below knee casting. Brewster et al
(2008) looked at below knee casting with softcast
rather than Plaster of Paris and although reported
good results the average time to tenotomy (8.5
weeks) is longer than the average with Plaster of
Paris (Ponseti and Somley, 1963; Laaveg and Ponseti,
1980; Cooper and Dietz, 1995; Dyer and Davis 2006;
Alves et al, 2009). There is also a higher rate of
tenotomies within the below knee group. Most
centres adhere strictly to above knee casting as
originally described by Ponseti (1996). Anecdotal
reports of cast slips in below knee casts are frequent.
Ponseti (1963) advocated the use of quick setting
Plaster of Paris for casting which allowed excellent
moulding of the foot. Soft cast or semi rigid
synthetic cast is sometimes used as a variant as it is
51
Ponseti Method of Clubfoot Treatment for Physiotherapists: Putting the
Denise Watson MCSP
Author’s email: Denise.Watson@chelwest.nhs.uk
________________________________________________________________________________
Introduction
Congenital Talipes Equino Varus (CTEV) or clubfoot
is one of the most common musculo-skeletal
deformities present from birth occurring in 1.2/1000
live births in Europe (Wynne-Davis, 1964), but with
incidence differing widely across races (Carroll,
2011), (Global Clubfoot Initiative). Since the mid
1990’s there has been a move in preferred treatment,
from correction by complex surgical intervention, to
the Ponseti Method.
Ignacio Ponseti first described his technique of
manipulation, serial casting, achilles tendon
tenotomy and abduction bracing in 1963 (Ponseti
and Smoley, 1963) but the method was not widely
introduced until a series of papers looked at the long
term results of this method in the 1980’s-1990’s
(Laaveg and Ponseti, 1980; Cooper and Dietz, 1995).
The Ponseti method is now seen as the ‘Gold
Standard’ for clubfoot treatment and results have
been successfully reproduced throughout the world
(Lavy et al, 2007; Gul and Sandamban, 2007; Pirani et
al, 2009).
The author works in a designated physiotherapy led
Ponseti clubfoot service. In 2011-2012, 100 new
babies with structural clubfoot were treated with
approximately 50 children seen in the Ponseti clinics
each week.
In this review specific elements of the Ponseti
method are presented, which are especially relevant
to physiotherapists who work within teams
practicing the technique. It is based on the available
evidence as reviewed in the previous paper and the
experience of the Ponseti team at the author’s NHS
trust. Some variations in the method will also be
discussed.
Diagnosis
In the UK, many families receive their clubfoot
diagnosis at their anomaly scan at 16-20 weeks
gestation. There is much information available on
the internet with UK charities such as STEPS
50
(www.steps-charity.org.uk) supplying online advice
and support. Some families receive pre-natal
counselling but still a significant number of babies
are born with no ante-natal diagnosis (Radler et al,
2010) which can be confusing and traumatic for the
parents. Good recorded outcomes of the Ponseti
Method allow the health care professional to offer
some reassurance that most babies with primary
idiopathic clubfoot treated using the Ponseti Method
will achieve good results (Copper and Dietz, 1995).
Assessment / Scoring Systems and Outcome
Measures
The two most widely used scoring systems for
assessing the severity of clubfoot deformity are the
Pirani score and the Dimeglio score (Flynn et al,
1999; Dyer and Davis, 2006). The interobserver
reliability has been found to favour the Pirani
scoring system with a mean difference of 0.6 (out of
10)and 1.4 for the Dimeglio score (out of 20) with a
correlation coefficient of 0.90(p=0.0001) for the Pirani
score (Jowett et al, 2009).
The Pirani score is readily available and well
explained in the excellent Global-help free download
booklet ‘Clubfoot: Ponseti Management’
(www.global-help.org), and is widely used as a
training tool in instruction to new Clubfoot
practitioners learning to use the Ponseti Method.
The initial Pirani score has also been shown to be an
indicator for tenotomy (Dobbs et al, 2004) with an
initial score above 5 a reliable predictor for the need
for Achilles tendon tenotomy in order gain full
correction. A low score however ‘cannot exclude the
need for tenotomy’ (Dyer and Davis, 2006).
Later outcome measures, looking at patient
satisfaction and function have also been developed.
Cooper and Dietz (1995) use the Roye score to record
patient based outcomes in their 35 year follow up
study and the Child Health Questionnaire (CHQ)
has also been used to assess patient quality of life.
More complex assessment tools such as the Oxford
Ankle Foot Questionnaire for Children can also be
used which focuses on function and patient
satisfaction. Radiographs have been shown to be an
unreliable form of assessing outcome (Vitale et al,
2005).
Manipulation and Casting
Manipulation and casting can begin as soon as the
baby is born. In Ponseti’s original paper (Ponseti
and Smoley, 1963) all patients presented between 0-6
months of age. Alves et al (2009) showed no
difference in correction between those starting
treatment before or after 6 months of age. There is
much emerging evidence, particularly from
developing world projects, that a long delay in
treatment start does not necessarily preclude
correction, with case study reports of neglected
clubfoot in teenagers correcting using Ponseti
Method (www.walkforlife.org.au; Nogueira et al,
2009). Small numbers and lack of long term
outcomes mean that further research and audit are
required with this older group to assess their long
term outcome. A preferred approach would be to
wait until the baby is 2-3 weeks of age so that
feeding is more established and the mother is
recovered from the birth. This timescale does
however rely on a high percentage of prenatally
diagnosed families within the cohort. Not all babies,
however, receive treatment this early due to delays
in referral, particularly if prenatal diagnosis has not
been made.
Ponseti initially described a 7-day change of cast rate
(Ponseti and Smoley, 1963). Several studies have
looked at accelerated treatment regimes, with
Hartnett et al (2011) advocating changing the casts as
frequently as three times per week, with no
difference in correction rates. This may be a difficult
service to provide within most NHS clinics but could
be considered for families who are travelling long
distances, as in this study in Malawi. In Iowa,
Morcuende et al (2005) found a 5-day cast change
was as effective as a 7-day cast change. The number
of casts performed using long leg Plaster of Paris, as
advocated by Ignacio Ponseti (1996), prior to
tenotomy, has been reported by many different
teams. Rates vary from between three and nine
(Ponseti and Smoley, 1963; Laaveg and Ponseti, 1980;
Cooper and Dietz, 1995; Dyer and Davis 2006; Alves
et al, 2009). In view of these findings, the authors
suggest that more than ten casts should be seen as a
warning that the casting regime is not progressing.
At this stage it may be appropriate to re-evaluate the
initial diagnosis or seek a second opinion from a
more experienced Ponseti team. The average
number of casts prior to tenotomy at the author’s
centre is four.
Cast slips are a commonly reported problem during
the manipulation and casting stage and on occasions
post-tenotomy. The authors have not identified any
specific research related to long term outcomes in
children who have had cast slips, although
photographic evidence of swollen and sore feet
following slippage in casts is well reported in case
discussions at clubfoot conferences and many
failures to correct are attributed to inability to keep
casts on. (Figures 1a & 1b). From experience,
changing casts more than weekly can be an effective
way of avoiding cast slips
Figures 1a & 1b – Swollen and sore feet resulting from cast
slippage
Above knee vs below knee casts / casting material
There has been some discussion about the necessity
of above knee casts. The reasons for taking the casts
above knee are to ensure that the casts do not slip off
and to maintain full abduction of the subtalar joint
with full external rotation of the foot and ankle
(Ponseti, 1996).
Several centres have explored the ability to correct
the foot using below knee casting. Brewster et al
(2008) looked at below knee casting with softcast
rather than Plaster of Paris and although reported
good results the average time to tenotomy (8.5
weeks) is longer than the average with Plaster of
Paris (Ponseti and Somley, 1963; Laaveg and Ponseti,
1980; Cooper and Dietz, 1995; Dyer and Davis 2006;
Alves et al, 2009). There is also a higher rate of
tenotomies within the below knee group. Most
centres adhere strictly to above knee casting as
originally described by Ponseti (1996). Anecdotal
reports of cast slips in below knee casts are frequent.
Ponseti (1963) advocated the use of quick setting
Plaster of Paris for casting which allowed excellent
moulding of the foot. Soft cast or semi rigid
synthetic cast is sometimes used as a variant as it is
51
thought to be preferred by parents and lighter and
easier to remove (Pittner et al, 2008), although it is a
lot more expensive than Plaster of Paris.
Pittner et al (2008) studied two groups, randomly
assigning one group to Plaster of Paris casts and the
other to softcast (semi rigid fibreglass) casts. They
found that there was a statistically significantly
lower Dimeglio score at the completion of casting in
the Plaster of Paris group. The long term results and
recurrence of deformity were not however evaluated
in this study.
Hui et al (2012), in a paper presented at the 2012
Ponseti Clubfoot Conference in Iowa USA, looked at
above knee soft casts compared with above knee
Plaster of Paris casts in a randomised control trial.
There was more variation in the number of softcasts
used but this was not statistically significant,
although the overall trend was for an increased
number of soft casts. A difference was seen however
in the relapse rate, with the softcast group being
significantly higher than the Plaster of Paris group.
Who performs the casting
The Ponseti Method was first described with the
casting and manipulation being performed by a
consultant orthopaedic surgeon, a model that is still
followed in most centres in the USA. In the UK it is
common practice for the casting to be performed by
healthcare professionals such as physiotherapists,
nurses and plaster technicians. There have been
several studies into the efficacy of the casting regime
performed by non-doctors. Studies by Shack and
Eastwood (2006) and Janicki et al (2009) showed that
physiotherapy led Ponseti clinics were as effective as
consultant led clinics in the UK and Canada. Tindall
et al (2005) described excellent results gained from
training orthopaedic medical officers to run Ponseti
clinics in Malawi; a model that has been widely used
in developing world projects where the number of
orthopaedic surgeons per capita is very limited.
The results of Ponseti’s original method have been
reproduced by many teams, following strict
adherence to his treatment principles (Ponseti, 1996;
Morcuende, 1994).
‘The aim of the treatment is early and full correction
of all components of the deformity by gentle
manipulations and well-moulded plaster casts. All
components of the clubfoot deformity must be
corrected simultaneously, not in sequence, except for
equinus, which should be corrected last’ (Ponseti,
1996).
The CAVE pneumonic (cavus, adductus, varus,
equinus) is used for teaching the method, to facilitate
order of correction and is well described in many
52
sources (www.global-help.org.uk). The correction
follows the anatomy of the foot and bony and soft
tissue abnormalities seen in the clubfoot deformity
(Ponseti, 1996).
Tenotomy
Percutaneous achilles tendon tenotomy is usually
required in order to correct fully residual equinus,
with complete division of the achilles tendon.
Quoted tenotomy rates vary from 50%-100% (Kampa
et al, 2008; Hegazy et al, 2009) with some variation
attributed to age and race. The majority of studies
describe the tenotomy performed under local
anaesthesia in the outpatient setting particularly for
the younger patient age group. There is
considerable variation in recommended pain relief
for this procedure with medication including,
Ametop, Emla, Lignocaine, Paracetamol, Ibruprofen
and Medazolam, Diprivan and Nitrous oxide (Bor et
al, 2009). In our practice, Ametop cream applied
more than 30 minutes before the procedure along
with pre-op Ibruprofen and post-op Paracetamol is
the normal regime for pain relief.
There is variation amongst centres as to whether
parents are present at the tenotomy. Ultimately the
preference of the surgeon performing the procedure
must be considered, along with the wishes of the
parents. At the author’s centre parents are given the
option to be present and generally prefer to stay with
the baby throughout the procedure.
The most common protocol for FAB use is 23
hours/day for 12 weeks post tentomy, then for night
times and naps until 4-5 years of age (www.stepscharity.org.uk). Initial advice was to wear the brace
up to 2 years of age but relapse rates of 56% (Ponseti
and Smoley, 1963) resulted in increasing this to 4-5
years of age with improved results (Morcuende et
al, 2004). Poor compliance with the brace regime
has however been shown to be a major contributing
factor to early relapse (Morcuende et al, 2005; Zionts
and Dietz, 2010). Concern regarding the abduction
inducing further tortional abnormaility has not been
shown to be founded (Boehm and Sinclair, 2007).
Several different makes of brace are available on the
market and have been shown to provide good
results thereby making patient satisfaction an
important component in the choice of brace as well
as cost. A static bar system has been found to be
more effective in maintaining ankle dorsiflexion
range than dynamic bar systems (Zionts and Dietz,
2010; Chen et al 2007) which are more costly,
although patient compliance is reported to be
improved with the dynamic bar. In the developing
world variations of the Steenbeck FAB provide a
much cheaper option, that can often be locally
manufactured and still achieve good results.
(www.global-Clubfoot.org; www.walkforlife.org.au;
Bouchoucha et al 2008). AFOs have been shown to
be less effective in reducing relapse rates (Janicki et
al, 2011) and should not therefore be used in the
idiopathic clubfoot.
Discussion
The Ponseti Method is well documented and there is
much evidence to support its use. It does however
require careful and strict adherence to its principles
and the casting and manipulation phase in particular
must be rigorous and meticulous. Poor casting can
result in failure to fully correct the foot and lead to
increased levels of extensive surgery (Herzenberg et
al, 2002).
Many UK teams treat very small numbers of
structural clubfeet each year. There is little evidence
to support a specific number of feet that need to be
treated per year to maintain competency levels,
however with such a precise technique better results
are more likely in centres that treat a larger numbers
of feet per year.
Physiotherapists have ideal skills to become ’Ponseti
Practitioners’. They have a thorough understanding
of anatomy, good handling skills and a patient
focussed approach to treatment. They are however
part of a team and cannot work in isolation, as an
orthopaedic surgeon is required, at very least, to
perform the achilles tendon tenotomies or possible
tibialis anterior tendon transfer.
Regional network groups are now in place
throughout the UK to support teams seeing small
numbers of patients.
Conclusion
The tenotomy allows final correction of the residual
equinus with an average of 17 degrees of
dorsiflexion achieved (Radler et al, 2007). Healing
time identified on ultrasonography shows that there
is evidence of continuity of the achilles tendon by
three weeks after tenotomy, but healing is not
complete until at least twelve weeks (Mangat et al,
2010). This is therefore a consideration of timing
when applying the foot abduction brace and
performing repeat tenotomies. Occasionally
additional post-tenotomy casting is required to
increase dorsiflexion range in order to aid boot
fitting. The author’s experience is that it is rare for
more than one additional cast to be required and
certainly more than two may indicate that the foot
was not fully corrected. This may be caused by
either incomplete tenotomy or lack of full correction
prior to tenotomy.
Foot Abduction Brace (FAB)
Once the foot is fully corrected by manipulation,
casting and probable achilles tendon tenotomy a
FAB is used to maintain the corrected position
(Ponseti, 1996) in much the same manner that a
dental retainer is used post orthodontic treatment.
Shack and Eastwood (2006) reported high levels of
patient satisfaction in their physiotherapist
delivered service, thus resulting in good compliance
rates with the FAB.
Tibialis Anterior Tendon Transfer
Tibialis anterior tendon transfer is described as part
of the Ponseti Method and should not be seen as a
failure of treatment (Peach and Davis, 2012). The
progressive appearance of forefoot dynamic
supination and heel varus are features of relapse
and indicators of muscle imbalance between the
evertor and invertor muscle groups. Rates of
tendon transfer have been reported between 5% and
30%, with Peach and Davis (2012) identifying a
correlation with the initial Pirani score and the
likelihood of requiring a tibialis anterior tendon
transfer later. Those with higher scores were
consistently more likely to require tibialis anterior
tendon transfer.
Follow up after completing bracing at 4-5 years is
therefore necessary to identify signs of relapse and
treat accordingly.
Although many babies in the UK are diagnosed
prenatally some are still diagnosed with idiopathic
clubfoot at birth. Excellent information regarding
clubfoot is available to parents both online and in
leaflet form, and translations into many languages
are available.
Casting can begin from as soon as the child is born
and there is evidence to support even teenagers
benefitting from casting and manipulation in the
primary idiopathic group (Alves et al, 2009).
Most UK services advocate weekly cast changes,
although increased frequency of cast changes can
also achieve good results and may be worth
considering if the family has long distances to travel
or there are problems with cast slippage.
The average number of casts prior to tenotomy is
between three and nine (Ponseti and Somley, 1963;
Laaveg and Ponseti, 1980; Cooper and Dietz, 1995;
Dyer and Davis 2006; Alves et al, 2009). More than
ten casts should be an indicator to closely reevaluate the foot and the initial diagnosis. The
authors would recommend seeking advice form a
53
thought to be preferred by parents and lighter and
easier to remove (Pittner et al, 2008), although it is a
lot more expensive than Plaster of Paris.
Pittner et al (2008) studied two groups, randomly
assigning one group to Plaster of Paris casts and the
other to softcast (semi rigid fibreglass) casts. They
found that there was a statistically significantly
lower Dimeglio score at the completion of casting in
the Plaster of Paris group. The long term results and
recurrence of deformity were not however evaluated
in this study.
Hui et al (2012), in a paper presented at the 2012
Ponseti Clubfoot Conference in Iowa USA, looked at
above knee soft casts compared with above knee
Plaster of Paris casts in a randomised control trial.
There was more variation in the number of softcasts
used but this was not statistically significant,
although the overall trend was for an increased
number of soft casts. A difference was seen however
in the relapse rate, with the softcast group being
significantly higher than the Plaster of Paris group.
Who performs the casting
The Ponseti Method was first described with the
casting and manipulation being performed by a
consultant orthopaedic surgeon, a model that is still
followed in most centres in the USA. In the UK it is
common practice for the casting to be performed by
healthcare professionals such as physiotherapists,
nurses and plaster technicians. There have been
several studies into the efficacy of the casting regime
performed by non-doctors. Studies by Shack and
Eastwood (2006) and Janicki et al (2009) showed that
physiotherapy led Ponseti clinics were as effective as
consultant led clinics in the UK and Canada. Tindall
et al (2005) described excellent results gained from
training orthopaedic medical officers to run Ponseti
clinics in Malawi; a model that has been widely used
in developing world projects where the number of
orthopaedic surgeons per capita is very limited.
The results of Ponseti’s original method have been
reproduced by many teams, following strict
adherence to his treatment principles (Ponseti, 1996;
Morcuende, 1994).
‘The aim of the treatment is early and full correction
of all components of the deformity by gentle
manipulations and well-moulded plaster casts. All
components of the clubfoot deformity must be
corrected simultaneously, not in sequence, except for
equinus, which should be corrected last’ (Ponseti,
1996).
The CAVE pneumonic (cavus, adductus, varus,
equinus) is used for teaching the method, to facilitate
order of correction and is well described in many
52
sources (www.global-help.org.uk). The correction
follows the anatomy of the foot and bony and soft
tissue abnormalities seen in the clubfoot deformity
(Ponseti, 1996).
Tenotomy
Percutaneous achilles tendon tenotomy is usually
required in order to correct fully residual equinus,
with complete division of the achilles tendon.
Quoted tenotomy rates vary from 50%-100% (Kampa
et al, 2008; Hegazy et al, 2009) with some variation
attributed to age and race. The majority of studies
describe the tenotomy performed under local
anaesthesia in the outpatient setting particularly for
the younger patient age group. There is
considerable variation in recommended pain relief
for this procedure with medication including,
Ametop, Emla, Lignocaine, Paracetamol, Ibruprofen
and Medazolam, Diprivan and Nitrous oxide (Bor et
al, 2009). In our practice, Ametop cream applied
more than 30 minutes before the procedure along
with pre-op Ibruprofen and post-op Paracetamol is
the normal regime for pain relief.
There is variation amongst centres as to whether
parents are present at the tenotomy. Ultimately the
preference of the surgeon performing the procedure
must be considered, along with the wishes of the
parents. At the author’s centre parents are given the
option to be present and generally prefer to stay with
the baby throughout the procedure.
The most common protocol for FAB use is 23
hours/day for 12 weeks post tentomy, then for night
times and naps until 4-5 years of age (www.stepscharity.org.uk). Initial advice was to wear the brace
up to 2 years of age but relapse rates of 56% (Ponseti
and Smoley, 1963) resulted in increasing this to 4-5
years of age with improved results (Morcuende et
al, 2004). Poor compliance with the brace regime
has however been shown to be a major contributing
factor to early relapse (Morcuende et al, 2005; Zionts
and Dietz, 2010). Concern regarding the abduction
inducing further tortional abnormaility has not been
shown to be founded (Boehm and Sinclair, 2007).
Several different makes of brace are available on the
market and have been shown to provide good
results thereby making patient satisfaction an
important component in the choice of brace as well
as cost. A static bar system has been found to be
more effective in maintaining ankle dorsiflexion
range than dynamic bar systems (Zionts and Dietz,
2010; Chen et al 2007) which are more costly,
although patient compliance is reported to be
improved with the dynamic bar. In the developing
world variations of the Steenbeck FAB provide a
much cheaper option, that can often be locally
manufactured and still achieve good results.
(www.global-Clubfoot.org; www.walkforlife.org.au;
Bouchoucha et al 2008). AFOs have been shown to
be less effective in reducing relapse rates (Janicki et
al, 2011) and should not therefore be used in the
idiopathic clubfoot.
Discussion
The Ponseti Method is well documented and there is
much evidence to support its use. It does however
require careful and strict adherence to its principles
and the casting and manipulation phase in particular
must be rigorous and meticulous. Poor casting can
result in failure to fully correct the foot and lead to
increased levels of extensive surgery (Herzenberg et
al, 2002).
Many UK teams treat very small numbers of
structural clubfeet each year. There is little evidence
to support a specific number of feet that need to be
treated per year to maintain competency levels,
however with such a precise technique better results
are more likely in centres that treat a larger numbers
of feet per year.
Physiotherapists have ideal skills to become ’Ponseti
Practitioners’. They have a thorough understanding
of anatomy, good handling skills and a patient
focussed approach to treatment. They are however
part of a team and cannot work in isolation, as an
orthopaedic surgeon is required, at very least, to
perform the achilles tendon tenotomies or possible
tibialis anterior tendon transfer.
Regional network groups are now in place
throughout the UK to support teams seeing small
numbers of patients.
Conclusion
The tenotomy allows final correction of the residual
equinus with an average of 17 degrees of
dorsiflexion achieved (Radler et al, 2007). Healing
time identified on ultrasonography shows that there
is evidence of continuity of the achilles tendon by
three weeks after tenotomy, but healing is not
complete until at least twelve weeks (Mangat et al,
2010). This is therefore a consideration of timing
when applying the foot abduction brace and
performing repeat tenotomies. Occasionally
additional post-tenotomy casting is required to
increase dorsiflexion range in order to aid boot
fitting. The author’s experience is that it is rare for
more than one additional cast to be required and
certainly more than two may indicate that the foot
was not fully corrected. This may be caused by
either incomplete tenotomy or lack of full correction
prior to tenotomy.
Foot Abduction Brace (FAB)
Once the foot is fully corrected by manipulation,
casting and probable achilles tendon tenotomy a
FAB is used to maintain the corrected position
(Ponseti, 1996) in much the same manner that a
dental retainer is used post orthodontic treatment.
Shack and Eastwood (2006) reported high levels of
patient satisfaction in their physiotherapist
delivered service, thus resulting in good compliance
rates with the FAB.
Tibialis Anterior Tendon Transfer
Tibialis anterior tendon transfer is described as part
of the Ponseti Method and should not be seen as a
failure of treatment (Peach and Davis, 2012). The
progressive appearance of forefoot dynamic
supination and heel varus are features of relapse
and indicators of muscle imbalance between the
evertor and invertor muscle groups. Rates of
tendon transfer have been reported between 5% and
30%, with Peach and Davis (2012) identifying a
correlation with the initial Pirani score and the
likelihood of requiring a tibialis anterior tendon
transfer later. Those with higher scores were
consistently more likely to require tibialis anterior
tendon transfer.
Follow up after completing bracing at 4-5 years is
therefore necessary to identify signs of relapse and
treat accordingly.
Although many babies in the UK are diagnosed
prenatally some are still diagnosed with idiopathic
clubfoot at birth. Excellent information regarding
clubfoot is available to parents both online and in
leaflet form, and translations into many languages
are available.
Casting can begin from as soon as the child is born
and there is evidence to support even teenagers
benefitting from casting and manipulation in the
primary idiopathic group (Alves et al, 2009).
Most UK services advocate weekly cast changes,
although increased frequency of cast changes can
also achieve good results and may be worth
considering if the family has long distances to travel
or there are problems with cast slippage.
The average number of casts prior to tenotomy is
between three and nine (Ponseti and Somley, 1963;
Laaveg and Ponseti, 1980; Cooper and Dietz, 1995;
Dyer and Davis 2006; Alves et al, 2009). More than
ten casts should be an indicator to closely reevaluate the foot and the initial diagnosis. The
authors would recommend seeking advice form a
53
large Ponseti centre via the Ponseti network group to
discuss on-going management.
Above knee Plaster of Paris casts have been shown
to be more effective than below knee casts with
lower cast numbers and reduced relapse rates.
Plaster of Paris is a cheaper and more effective
material for casting than softcast (Pittner et al, 2008;
Hui et al, 2012).
Effective Ponseti method practitioners can be from
multi-disciplinary backgrounds, and
physiotherapists have been shown to achieve
excellent results. Formal Ponseti training is advised
and meticulous attention to detail and a unified team
approach are essential.
Percutaneous achilles tendon tenotomies are
required in most cases. The tenotomy rate at the
author’s centre is >80%. Tenotomies can be
performed effectively without general anaesthesia in
the outpatient setting, with an average increase of 17
degrees of dorsiflexion at tenotomy. Some further
casting may be required post-tenotomy in order to
achieve enough dorsiflexion to fit the FAB effectively.
Good compliance with the FAB is a major
contributor to good long term outcomes. There is no
evidence that tortional abnormailities are created by
the use of the FAB. Use of the FAB until 4-5 years of
age has been shown to reduce recurrence. Use of
AFOs as an alternative have not been shown to be
effective in the idiopathic clubfoot.
Tibialis anterior tendon transfer is a recognised part
of the Ponseti method and should not be perceived
as a failure of treatment. Review of gait to observe
early signs of dynamic supination as an indicator of
muscle imbalance should be included in all followup appointments post walking age. Follow up after
cessation of the foot abduction brace is strongly
recommended. At the author’s centre children with
idiopathic clubfoot are followed up yearly until 10
years of age as a routine.
Excellent long-term results are possible using the
Ponseti Method in the treatment of clubfoot.
Meticulous attention to detail, a patient focused
approach and long term follow up are all required to
achieve such standards.
References
The references include websites frequently used by both families
and professionals which may be of interest and benefit to the
reader.
Treatment Make a Difference? Clinical Orthopaedics
Related Research. 467; 1271-1277.
54
Boehm S, Sinclair M (2007). Foot abduction brace in the
Ponseti method for idiopathic Clubfoot deformity: torsional
deformities and compliance. J Pediatr Orthop.
Sep;27(6):712-6.
Bor N, Coplan JA, Herzenberg JE (2009). Ponseti Treatment
for Idiopathic Clubfoot. Minimum 5-year Follow-up.
Clinical Orthopaedics and Related Research. 467; 12631270.
Bouchoucha S, Smida M, Saied W (2008). Early results of
the Ponseti Method using the Steenbeck foot abduction
brace: a prospective study of 95 feet. J pediatr orthop B ;27
134-138.
Caroll NC. (2011). Clubfoot in the twentieth century: where
we were and where we may be going in the twenty-first
century. Journal of Pediatric Orthopaedics B. 21; 1-6.
Bone and Joint Surgery (Br). 93-B; 700-4.
Ponseti method. A Systematic Review. Journal of Bone
and Joint Surgery Br, 93-B; 1160-4.
Radler C, Burghardt R, Grill F, Herzenberg J and Myers A
(2010). Prenatal Diagnosis of idiopathic Clubfoot. J Bone
Joint Surg Br vol. 92-B no. SUPP IV 599.
Cooper DM, Dietz FR (1995). Treatment of idiopathic
Clubfoot: a thirty year follow up note. J Bone Joint
Surg(Am):77-A:1477-1489.
Treatment of Congenital Clubfoot. The Journal of Bone
and Joint Surgery. 62-A (1) 23-31.
Gurnett CA (2004). Factors Predictive of Outcome after use
of the Ponseti Method for the Treatment of Idiopathic
Clubfeet. The Journal of Bone and Joint Surgery. 86-A (1)
22-7.
Lavy CB, Mannion SJ, Mkandewire NC (2007). Clubfoot
treatment in Malawi: a Public Health Approach. Dishabil
Rehabil; 29:857-862.
Gul A, Sandamban S. (2007). Results of manipulation of
idiopathic Clubfoot deformity in Malawi by orthopaedic
clinical officers using the Ponseti Method; a realistic
alternative for the developing world? J Pediatr Orthop;
29:971-972.
Hui C, Nettle-Aguirre A, Howard J (2012). Comparison of 2
different casting materials for the treatment of congenital
ideopathic Clubfoot using the Ponseti Method: a
randomised controlled trial. Paper presented at The
University of Iowa Ponseti Clubfoot conference 2012.
Hegazy M, Nasef NM, Abdel-Ghani H (2009). Results of
treatment of idiopathic Clubfoot in older infants using the
Ponseti method: a preliminary report. J Pediatr Orthop B.
Mar;18(2):76-8.
Ponseti I. (1996). Congenital Clubfoot: Fundamentals of
Treatment. Oxford,UK: Oxford university Press.
Related Research. 467; 1133-1145. Reprint of Original.
(1963) Journal of Bone and Joint Surgery Am; 45; 261-344).
Chen RC, Gordon JE, Luhmann SJ, Schoenecker PL, Dobbs
MB (2007). A new dynamic foot abduction orthosis for
Clubfoot treatment. J Pediatr Orthop. Jul-Aug;27(5):522-8.
Flynn JM, Donohoe M, Mackenzie WG (1999). An
independent assessment of two Clubfoot classification
systems. J pediatr orthop ;18:323-7.
250-3.
Janicki J, Narayanan U, Harvey B, Roy A, Weir S, Wright J
(2009). Comparison of Surgeon and PhysiotherapistDirected Ponseti Treatment of Idiopathic Clubfoot. J Bone
Joint Surg Am. ;91:1101-1108.
Kampa R, Binks K, Dunkley M, Coates C (2008).
Multidisciplinary management of Clubfeet using the
Ponseti method in a district general hospital setting. J
Child Orthop. December; 2(6): 463–467.Published online
2008 September 26. doi: 10.1007/s11832-008-0134-9.
Dyer PJ, Davis N (2006). The role of the Pirani scoring
system in the management of clubfoot by the Ponseti
method. J bone Joint Surg(br) ;88-B:1082-4.
Clubfoot care project. Clin Orthop :467:1154-1163.
Mangat KS, Kanwar R, Johnson K, Korah G, Prem H
(2010). Ultrasonographic phases in gap healing following
Ponseti-type Achilles tenotomy J bone joint surg(Am);92A:1462-1467.
Morcuende JA, Abbasi D, Dolan LA, Ponseti IV (2005).
Results of an accelerated Ponseti protocol for Clubfoot.J
Pediatr Orthop. Sep-Oct;25(5):623-6.
Morcuende JA, Dolan LA, Dietz FR, Ponseti IV (2004).
Radical reduction in the rate of extensive corrective
surgery for Clubfoot using the Ponseti Method. Pediatrics.
Feb;113(2):376-80.
Morcuende JA, Weinstein SL, Dietz FR, Ponseti, Ignacio V
(1994). Plaster Cast Treatment of Clubfoot: The Ponseti
Method of Manipulation and Casting. Journal of Pediatric
Orthopaedics B: 3:161-167.
Nogueira MP, Ey Batlle AM, Alves CG (2009). Is it
possible to treat recurrent Clubfoot with the Ponseti
technique after posteromedial release? a preliminary
study. Clin Orthop Relat Res. May;467(5):1298-305. doi:
10.1007/s11999-009-0718-9. Epub 2009 Feb 4.
Peach C, Davis N (2012). predicting the outcome for the
Ponseti Method: Pirani scoring in the management of
Clubfoot. J Bone Joint Surg Br vol. 94-B.
Pirani S, Naddumba E, Mathias R (2009). Towards
effective Ponseti Clubfoot care: the Uganda sustainable
Radler C, Herzenberg J (2007). Radiographic evaluation of
idiopathic clubfeet undergoing Ponseti treatment, JBJS
Am.
foot deformity. The Journal of Bone and Joint Surgery. 88B (8) 1085-9.
Tindall AJ, Steinlechner CWE, Lavy CBD, Mannion S,
Mkandawire N (2005). Results Of Manipulation Of
Idiopathic Clubfoot Deformity In Malawi By Orthopaedic
Clinical Officers Using The Ponseti Method: A Realistic
Alternative For The Developing World? Journal of
Pediatric Orthopaedics. ; 5(25): 627-629.
Vitale MG, Choe JC, Vitale MA, Lee FY, Hyman JE, Roye
DP Jr. (2005). Patient-based outcomes following Clubfoot
surgery: a 16-year follow-up study. J Pediatr Orthop. JulAug;25(4):533-8.
Wynne-Davies R. Family studies and the case of
congenital talipesequinovarus, talipes calcaneo-valgus
and metatarsus varus. J bone joint surg(br) 1964:64-B:44563.
Zionts L, Dietz F (2010). Bracing Following Correction of
Idiopathic Clubfoot Using the Ponseti Method. J Am Acad
Orthop Surg August ; 18:486-493.
www.global-help.org
www.steps-charity.org.uk
www.Walkforlife.org.au
Child Health Questionnaire(CHQ)
http://www.healthactchq.com/chq.php?gclid=CLX1tbSV
p70CFQcewwodHo8ArA
The Oxford Foot and Ankle Questionnaire For Children
www.isis-innovation.com/outcomes/orthopaedic
55
large Ponseti centre via the Ponseti network group to
discuss on-going management.
Above knee Plaster of Paris casts have been shown
to be more effective than below knee casts with
lower cast numbers and reduced relapse rates.
Plaster of Paris is a cheaper and more effective
material for casting than softcast (Pittner et al, 2008;
Hui et al, 2012).
Effective Ponseti method practitioners can be from
multi-disciplinary backgrounds, and
physiotherapists have been shown to achieve
excellent results. Formal Ponseti training is advised
and meticulous attention to detail and a unified team
approach are essential.
Percutaneous achilles tendon tenotomies are
required in most cases. The tenotomy rate at the
author’s centre is >80%. Tenotomies can be
performed effectively without general anaesthesia in
the outpatient setting, with an average increase of 17
degrees of dorsiflexion at tenotomy. Some further
casting may be required post-tenotomy in order to
achieve enough dorsiflexion to fit the FAB effectively.
Good compliance with the FAB is a major
contributor to good long term outcomes. There is no
evidence that tortional abnormailities are created by
the use of the FAB. Use of the FAB until 4-5 years of
age has been shown to reduce recurrence. Use of
AFOs as an alternative have not been shown to be
effective in the idiopathic clubfoot.
Tibialis anterior tendon transfer is a recognised part
of the Ponseti method and should not be perceived
as a failure of treatment. Review of gait to observe
early signs of dynamic supination as an indicator of
muscle imbalance should be included in all followup appointments post walking age. Follow up after
cessation of the foot abduction brace is strongly
recommended. At the author’s centre children with
idiopathic clubfoot are followed up yearly until 10
years of age as a routine.
Excellent long-term results are possible using the
Ponseti Method in the treatment of clubfoot.
Meticulous attention to detail, a patient focused
approach and long term follow up are all required to
achieve such standards.
References
The references include websites frequently used by both families
and professionals which may be of interest and benefit to the
reader.
Treatment Make a Difference? Clinical Orthopaedics
Related Research. 467; 1271-1277.
54
Boehm S, Sinclair M (2007). Foot abduction brace in the
Ponseti method for idiopathic Clubfoot deformity: torsional
deformities and compliance. J Pediatr Orthop.
Sep;27(6):712-6.
Bor N, Coplan JA, Herzenberg JE (2009). Ponseti Treatment
for Idiopathic Clubfoot. Minimum 5-year Follow-up.
Clinical Orthopaedics and Related Research. 467; 12631270.
Bouchoucha S, Smida M, Saied W (2008). Early results of
the Ponseti Method using the Steenbeck foot abduction
brace: a prospective study of 95 feet. J pediatr orthop B ;27
134-138.
Caroll NC. (2011). Clubfoot in the twentieth century: where
we were and where we may be going in the twenty-first
century. Journal of Pediatric Orthopaedics B. 21; 1-6.
Bone and Joint Surgery (Br). 93-B; 700-4.
Ponseti method. A Systematic Review. Journal of Bone
and Joint Surgery Br, 93-B; 1160-4.
Radler C, Burghardt R, Grill F, Herzenberg J and Myers A
(2010). Prenatal Diagnosis of idiopathic Clubfoot. J Bone
Joint Surg Br vol. 92-B no. SUPP IV 599.
Cooper DM, Dietz FR (1995). Treatment of idiopathic
Clubfoot: a thirty year follow up note. J Bone Joint
Surg(Am):77-A:1477-1489.
Treatment of Congenital Clubfoot. The Journal of Bone
and Joint Surgery. 62-A (1) 23-31.
Gurnett CA (2004). Factors Predictive of Outcome after use
of the Ponseti Method for the Treatment of Idiopathic
Clubfeet. The Journal of Bone and Joint Surgery. 86-A (1)
22-7.
Lavy CB, Mannion SJ, Mkandewire NC (2007). Clubfoot
treatment in Malawi: a Public Health Approach. Dishabil
Rehabil; 29:857-862.
Gul A, Sandamban S. (2007). Results of manipulation of
idiopathic Clubfoot deformity in Malawi by orthopaedic
clinical officers using the Ponseti Method; a realistic
alternative for the developing world? J Pediatr Orthop;
29:971-972.
Hui C, Nettle-Aguirre A, Howard J (2012). Comparison of 2
different casting materials for the treatment of congenital
ideopathic Clubfoot using the Ponseti Method: a
randomised controlled trial. Paper presented at The
University of Iowa Ponseti Clubfoot conference 2012.
Hegazy M, Nasef NM, Abdel-Ghani H (2009). Results of
treatment of idiopathic Clubfoot in older infants using the
Ponseti method: a preliminary report. J Pediatr Orthop B.
Mar;18(2):76-8.
Ponseti I. (1996). Congenital Clubfoot: Fundamentals of
Treatment. Oxford,UK: Oxford university Press.
Related Research. 467; 1133-1145. Reprint of Original.
(1963) Journal of Bone and Joint Surgery Am; 45; 261-344).
Chen RC, Gordon JE, Luhmann SJ, Schoenecker PL, Dobbs
MB (2007). A new dynamic foot abduction orthosis for
Clubfoot treatment. J Pediatr Orthop. Jul-Aug;27(5):522-8.
Flynn JM, Donohoe M, Mackenzie WG (1999). An
independent assessment of two Clubfoot classification
systems. J pediatr orthop ;18:323-7.
250-3.
Janicki J, Narayanan U, Harvey B, Roy A, Weir S, Wright J
(2009). Comparison of Surgeon and PhysiotherapistDirected Ponseti Treatment of Idiopathic Clubfoot. J Bone
Joint Surg Am. ;91:1101-1108.
Kampa R, Binks K, Dunkley M, Coates C (2008).
Multidisciplinary management of Clubfeet using the
Ponseti method in a district general hospital setting. J
Child Orthop. December; 2(6): 463–467.Published online
2008 September 26. doi: 10.1007/s11832-008-0134-9.
Dyer PJ, Davis N (2006). The role of the Pirani scoring
system in the management of clubfoot by the Ponseti
method. J bone Joint Surg(br) ;88-B:1082-4.
Clubfoot care project. Clin Orthop :467:1154-1163.
Mangat KS, Kanwar R, Johnson K, Korah G, Prem H
(2010). Ultrasonographic phases in gap healing following
Ponseti-type Achilles tenotomy J bone joint surg(Am);92A:1462-1467.
Morcuende JA, Abbasi D, Dolan LA, Ponseti IV (2005).
Results of an accelerated Ponseti protocol for Clubfoot.J
Pediatr Orthop. Sep-Oct;25(5):623-6.
Morcuende JA, Dolan LA, Dietz FR, Ponseti IV (2004).
Radical reduction in the rate of extensive corrective
surgery for Clubfoot using the Ponseti Method. Pediatrics.
Feb;113(2):376-80.
Morcuende JA, Weinstein SL, Dietz FR, Ponseti, Ignacio V
(1994). Plaster Cast Treatment of Clubfoot: The Ponseti
Method of Manipulation and Casting. Journal of Pediatric
Orthopaedics B: 3:161-167.
Nogueira MP, Ey Batlle AM, Alves CG (2009). Is it
possible to treat recurrent Clubfoot with the Ponseti
technique after posteromedial release? a preliminary
study. Clin Orthop Relat Res. May;467(5):1298-305. doi:
10.1007/s11999-009-0718-9. Epub 2009 Feb 4.
Peach C, Davis N (2012). predicting the outcome for the
Ponseti Method: Pirani scoring in the management of
Clubfoot. J Bone Joint Surg Br vol. 94-B.
Pirani S, Naddumba E, Mathias R (2009). Towards
effective Ponseti Clubfoot care: the Uganda sustainable
Radler C, Herzenberg J (2007). Radiographic evaluation of
idiopathic clubfeet undergoing Ponseti treatment, JBJS
Am.
foot deformity. The Journal of Bone and Joint Surgery. 88B (8) 1085-9.
Tindall AJ, Steinlechner CWE, Lavy CBD, Mannion S,
Mkandawire N (2005). Results Of Manipulation Of
Idiopathic Clubfoot Deformity In Malawi By Orthopaedic
Clinical Officers Using The Ponseti Method: A Realistic
Alternative For The Developing World? Journal of
Pediatric Orthopaedics. ; 5(25): 627-629.
Vitale MG, Choe JC, Vitale MA, Lee FY, Hyman JE, Roye
DP Jr. (2005). Patient-based outcomes following Clubfoot
surgery: a 16-year follow-up study. J Pediatr Orthop. JulAug;25(4):533-8.
Wynne-Davies R. Family studies and the case of
congenital talipesequinovarus, talipes calcaneo-valgus
and metatarsus varus. J bone joint surg(br) 1964:64-B:44563.
Zionts L, Dietz F (2010). Bracing Following Correction of
Idiopathic Clubfoot Using the Ponseti Method. J Am Acad
Orthop Surg August ; 18:486-493.
www.global-help.org
www.steps-charity.org.uk
www.Walkforlife.org.au
Child Health Questionnaire(CHQ)
http://www.healthactchq.com/chq.php?gclid=CLX1tbSV
p70CFQcewwodHo8ArA
The Oxford Foot and Ankle Questionnaire For Children
www.isis-innovation.com/outcomes/orthopaedic
55
J.Rawlings / APCP Journal Volume 5 Number 1 (2014) 56-63
Jean Rawlings
Coventry and Warkwickshire Partnership NHS Trust
Author’s email: Jean.Rawlings@covwarkpt.nhs.uk
________________________________________________________________________________
Introduction
The report discusses the introduction of an equitable multi-professional pathway for children with Down
Syndrome (DS). It considers whether the pathway meets the needs of parents and carers, and reviews the
development of motor skills of children with DS who were placed on the pathway.
It is accepted that these children will have some level of learning difficulty and experience some degree of
delay in both fine and gross motor skills. There seems to be no clearly evidenced treatment pathway and so
provision differs from one area to another, however Rauh et al (1987) suggests that DS infants require more
intervention to encourage their development. This implies physiotherapy input would be beneficial to
stimulate development.
__________________________________________________________________________________________________
Background
This report describes and evaluates a change in
service delivery from the previous treatment model
to a more equitable pathway. The previous model
involved weekly/monthly visits where each
physiotherapist would clinically decide when to
visit a child at home or in nursery. This was very
dependent on time constraints and availability of
the family and the therapist. This approach also
reduced opportunity to merge diaries to include
other professionals.
The aim of the new pathway was to increase
involvement of parents and other professionals, and
to provide a more equitable physiotherapy
approach. This involved the development of a
dedicated clinic, to bring additional efficiencies to
physiotherapy time.
Literature Review
A literature search was completed using an
educational search engine, entering ‘Down
Syndrome’, ‘physiotherapy’ and ‘motor milestones’
as search parameters. The returned articles’
abstracts were analysed and articles read fully if
they were relevant.
Previous research surrounding physiotherapy for
children with DS is limited, with few studies
investigating the outcome of standardised
physiotherapy intervention. The following papers
were deemed to be the most relevant to review as
they demonstrated some similar qualities to this
study, based on sample size, detailed demographics
56
of sample, pathway and methods of treatment.
The Cunningham checklist (Table 1) is often used in
clinical practice (Downs Syndrome Medical Interest
Group, 2006; Sachs and Buckley, 2003). This was
one of the first pieces of research to analyse motor
milestone achievement of children with DS. It
seems to be popular due to the ease of use, however
the results are not detailed enough for drawing a
direct comparison with the way outcomes were
measured in the new pathway because crawling
was assessed alongside bottom hitching and the
results did not indicate a differentiation in which
skill was acquired.
Item
No Description of Behaviour
11 Holds Head up
for 15 seconds
34 Balances head and holds
it steady when swayed
42 Rolls from back to front
and front to back
45 Sits without support for
1 minute or more
52 Sits steadily for 10
minutes or more and is
well balanced
56 When lying down pulls
himself up to sit
60 Pulls to standing
position on furniture
64 Walks with hands held
66 Stand alone
71 Walks 3 or more steps
without support
Age Achieved (months)
No. of
babies
Earliest
Ave
Latest
1½
3
5½
24
3
5
8½
31
4
8
11
37
7
10
15½
37
8½
11
15½
35
8½
14½
24
35
10
16½
24
33
10
15½
15½
17½
21½
24
30
36
42
30
29
27
Winders (1997) completed a study on babies with
DS in the USA. Children’s achievements were
recorded on her own ‘standardised objective form’
(Winders, 1997), based on her observation of
particular physical skills. There is no indication in
the results as to the severity of each child’s
condition, and how this affects their achievement of
milestones. It gives the average age of attainment of
a range of skills she has observed, setting her own
criteria. It was therefore difficult to compare the
outcomes of children on the new pathway with
those of Winders.
Winders stated ‘muscle tone is by far the most
important factor affecting the age at which skills are
achieved. The lower a child’s tone, the longer acquisition
will be delayed.’
This concept has been used further (Palisano et al,
2001) and other research has developed this idea.
Haley (1986) came to a similar conclusion while
studying motor behaviour in infants. He concluded
that delays in postural reaction development are
directly related to delays in motor milestones in
infants with DS.
Winders explains which skills are appropriate for
each stage of development. The book details how
the skills are broken down and makes suggestions
Age
(months)
Rolling
Sitting
Crawling
Standing
Walking
Running
Climbing
step
Jumping
forward
for activities. She describes the difficulties a child
with DS faces to achieve motor skills: hypotonia,
increased flexibility in joints, decreased strength and
short arms and legs.
Based on method and sample, the estimates of
probability of achieving certain motor skills at
different ages in the study by Palisano et al (2001),
were considered to be the most appropriate
comparison. In their detailed study, the authors
used the Gross Motor Function Measure (GMFM)
(Russell et al, 1998) to record the age of achievement
of certain motor skills. They also recorded the
degree to which the children were affected by DS,
and the parameters of these criteria. One hundred
and twenty-one children with DS who were on an
early intervention programme were assessed. It is
unclear from the study, however, whether these
children were volunteers or a complete cohort.
Thirty-three of these children were in the
programme before the age of one. Logistical
regression was used to calculate the probability of
achieving a range of motor skills by different ages
using cross sectional data (Table 2). Numerous
therapists work in the study, to record data and
treat, which leads to reduced inter-rater reliability.
For further direct comparisons between Palisano et
al (2001) and this service evaluation please see Table
3.
6
12
18
24
30
36
48
60
72
51
8
10
4
1
1
64
78
19
14
4
2
74
99
34
40
14
3
83
100
53
73
40
5
89
100
71
91
74
8
93
100
84
98
92
12
97
100
96
100
99
25
99
100
99
100
100
45
100
100
100
100
100
67
0
0
1
1
3
5
18
46
77
0
0
0
1
2
5
18
52
84
Table 2 – Predicted probability of achieving gross motor functions across ages for children with DS based on logistic
regression (Palisano, 2001)
Table 1 – Age of attainment for items of behaviour for babies
with Down Syndrome (Cunnigham and Sloper, 1978)
57
Jean Rawlings
Coventry and Warkwickshire Partnership NHS Trust
Author’s email: Jean.Rawlings@covwarkpt.nhs.uk
________________________________________________________________________________
Introduction
The report discusses the introduction of an equitable multi-professional pathway for children with Down
Syndrome (DS). It considers whether the pathway meets the needs of parents and carers, and reviews the
development of motor skills of children with DS who were placed on the pathway.
It is accepted that these children will have some level of learning difficulty and experience some degree of
delay in both fine and gross motor skills. There seems to be no clearly evidenced treatment pathway and so
provision differs from one area to another, however Rauh et al (1987) suggests that DS infants require more
intervention to encourage their development. This implies physiotherapy input would be beneficial to
stimulate development.
__________________________________________________________________________________________________
Background
This report describes and evaluates a change in
service delivery from the previous treatment model
to a more equitable pathway. The previous model
involved weekly/monthly visits where each
physiotherapist would clinically decide when to
visit a child at home or in nursery. This was very
dependent on time constraints and availability of
the family and the therapist. This approach also
reduced opportunity to merge diaries to include
other professionals.
The aim of the new pathway was to increase
involvement of parents and other professionals, and
to provide a more equitable physiotherapy
approach. This involved the development of a
dedicated clinic, to bring additional efficiencies to
physiotherapy time.
Literature Review
A literature search was completed using an
educational search engine, entering ‘Down
Syndrome’, ‘physiotherapy’ and ‘motor milestones’
as search parameters. The returned articles’
abstracts were analysed and articles read fully if
they were relevant.
Previous research surrounding physiotherapy for
children with DS is limited, with few studies
investigating the outcome of standardised
physiotherapy intervention. The following papers
were deemed to be the most relevant to review as
they demonstrated some similar qualities to this
study, based on sample size, detailed demographics
56
of sample, pathway and methods of treatment.
The Cunningham checklist (Table 1) is often used in
clinical practice (Downs Syndrome Medical Interest
Group, 2006; Sachs and Buckley, 2003). This was
one of the first pieces of research to analyse motor
milestone achievement of children with DS. It
seems to be popular due to the ease of use, however
the results are not detailed enough for drawing a
direct comparison with the way outcomes were
measured in the new pathway because crawling
was assessed alongside bottom hitching and the
results did not indicate a differentiation in which
skill was acquired.
Item
No Description of Behaviour
11 Holds Head up
for 15 seconds
34 Balances head and holds
it steady when swayed
42 Rolls from back to front
and front to back
45 Sits without support for
1 minute or more
52 Sits steadily for 10
minutes or more and is
well balanced
56 When lying down pulls
himself up to sit
60 Pulls to standing
position on furniture
64 Walks with hands held
66 Stand alone
71 Walks 3 or more steps
without support
Age Achieved (months)
No. of
babies
Earliest
Ave
Latest
1½
3
5½
24
3
5
8½
31
4
8
11
37
7
10
15½
37
8½
11
15½
35
8½
14½
24
35
10
16½
24
33
10
15½
15½
17½
21½
24
30
36
42
30
29
27
Winders (1997) completed a study on babies with
DS in the USA. Children’s achievements were
recorded on her own ‘standardised objective form’
(Winders, 1997), based on her observation of
particular physical skills. There is no indication in
the results as to the severity of each child’s
condition, and how this affects their achievement of
milestones. It gives the average age of attainment of
a range of skills she has observed, setting her own
criteria. It was therefore difficult to compare the
outcomes of children on the new pathway with
those of Winders.
Winders stated ‘muscle tone is by far the most
important factor affecting the age at which skills are
achieved. The lower a child’s tone, the longer acquisition
will be delayed.’
This concept has been used further (Palisano et al,
2001) and other research has developed this idea.
Haley (1986) came to a similar conclusion while
studying motor behaviour in infants. He concluded
that delays in postural reaction development are
directly related to delays in motor milestones in
infants with DS.
Winders explains which skills are appropriate for
each stage of development. The book details how
the skills are broken down and makes suggestions
Age
(months)
Rolling
Sitting
Crawling
Standing
Walking
Running
Climbing
step
Jumping
forward
for activities. She describes the difficulties a child
with DS faces to achieve motor skills: hypotonia,
increased flexibility in joints, decreased strength and
short arms and legs.
Based on method and sample, the estimates of
probability of achieving certain motor skills at
different ages in the study by Palisano et al (2001),
were considered to be the most appropriate
comparison. In their detailed study, the authors
used the Gross Motor Function Measure (GMFM)
(Russell et al, 1998) to record the age of achievement
of certain motor skills. They also recorded the
degree to which the children were affected by DS,
and the parameters of these criteria. One hundred
and twenty-one children with DS who were on an
early intervention programme were assessed. It is
unclear from the study, however, whether these
children were volunteers or a complete cohort.
Thirty-three of these children were in the
programme before the age of one. Logistical
regression was used to calculate the probability of
achieving a range of motor skills by different ages
using cross sectional data (Table 2). Numerous
therapists work in the study, to record data and
treat, which leads to reduced inter-rater reliability.
For further direct comparisons between Palisano et
al (2001) and this service evaluation please see Table
3.
6
12
18
24
30
36
48
60
72
51
8
10
4
1
1
64
78
19
14
4
2
74
99
34
40
14
3
83
100
53
73
40
5
89
100
71
91
74
8
93
100
84
98
92
12
97
100
96
100
99
25
99
100
99
100
100
45
100
100
100
100
100
67
0
0
1
1
3
5
18
46
77
0
0
0
1
2
5
18
52
84
Table 2 – Predicted probability of achieving gross motor functions across ages for children with DS based on logistic
regression (Palisano, 2001)
Table 1 – Age of attainment for items of behaviour for babies
with Down Syndrome (Cunnigham and Sloper, 1978)
57
Palisano et al (2001)
DS Pathway
Clients of early intervention programmes, South
Ontario, Canada. It is unclear if these children were
volunteers or a complete cohort
All children born in the area from September 2002 – September 2011.
This cohort of children, therefore reflected the wide variation of
ability in children with DS
Exclusion
10 children who did not complete the study and 2
for whom motor impairment was not determined
One child who had an additional severe motor impairment. All
children who moved away from the area before achieving walking
Number
121 total participants
Study
sample
Age
1.7 – 72 months
33 under 1 year at enrolment
2 – 54 months
All under 1 year at enrolment
Severity
51 – mild (42%)
64 – moderate (53%)
6 – severe (5%)
10 – mild (31%)
6 – severe (19%)
(the criteria uses was the same as that published in the Palisano et al
study)
Test
GMFM – standard procedure for administering
GMFM used, scoring the motor behaviour actually
performed during the assessment. See Appendix 2
for results published
Selected elements of GMFM assessed:
24 – sitting
45 – crawling
69 – walking
Data
Analysis
The probability that a child could perform motor
functions by different ages was estimated using
logistic regression on the cross sectional data
Data was recorded on the basis of observation of skills as they
developed. The recording was done at 3 monthly intervals. A skill
could develop but not be recorded for up to 12 weeks
Assessors
18 Assessors (9 physiotherapists, 8 OTs, 1
Psychometrist),
17 had 5 or more years experience working with
children
children with DS
2 Senior Physiotherapists
Both with more than 5 years experience working with children with
DS
Table 3 – Comparison of the Palisano et al (2001) study and the DS Pathway
The Care Pathway and the Clinic
All children with DS with registerd with a GP in the
area were placed on the DS pathway (Figure 1).
An initial home visit was completed in order to
undertake a full assessment of the child, and
introduce therapy to the parents in a non-clinical
environment. The therapy pathway was discussed
and goals were set at this visit.
All children were subsequently seen at three
monthly intervals by a physiotherapist, mostly in
the clinic. Goals were reviewed regularly; advice
and treatment strategies were discussed and taught.
These were shared with the Portage workers and
incorporated into Portage targets. Two home visits
were carried out at monthly intervals between
clinics by a physiotherapy assistant until the child
was crawling. This was to reinforce the programme
in the intervening months until the next clinic.
The clinic itself was carried out in a large room.
There were three specific treatment areas arranged
around mats on the floor, which each offered a
selection of toys and therapy aids. This facilitated
ease of interaction between parents, other
professions involved with the child and the
physiotherapist. Parents could see other children
using similar positions for play that their child was
being encouraged to adopt, and interaction between
parents and peer support was actively encouraged.
Motor milestones were recorded as achieved only
when the physiotherapist actually observed the
child complete the skill. This avoided any
inconsistencies that might arise with parental
reporting.
Methodology
Participants
• All babies with DS born from 1 September 2002
until 1 March 2011 who were placed on the
new DS care pathway.
• The parents of all children born between 1st
September 2002 and 1st June 2007 involved in
the new clinic, were invited to complete the
parent questionnaire (Appendix 1). All
parents/carers were involved in the
physiotherapy pathway regardless of response
to the questionnaire.
• Two senior physiotherapists and two
assistants.
• Other professionals who attended clinics,
including occupational therapy, paediatricians
and speech and language therapy and the
Portage co-ordinator and the team of Portage
workers in Coventry
58
The approach taken in the clinic was one that
encouraged developmentally sequenced movement
patterns (Sheridan, 2008). Great emphasis was put
on achieving head control and then shoulder
stability and arm strength. This is similar to the
approach taken by Winders (1997).
Sitting was neither taught nor encouraged.
Children were given appropriate seating when twohanded activities needed to be facilitated. It was felt
that fine motor skills should not be delayed because
of a lack of sitting balance or compromised when
working on gross motor skills.
Figure 1 – The DS Pathway
The maximum number of children that could be
seen was twelve, due to constraints in room size and
availability of staff. On the few occasions that there
were more than twelve children to be reviewed, the
clinic was extended in duration to accommodate the
extra children. This enabled the therapists to work
effectively in the space and to accommodate parents
and other professionals working collaboratively
together. Each child’s Portage worker was
encouraged to attend appointments with parents
and joint targets were set. A separate waiting area
with refreshments was available which was flexible
in its use and promoted a relaxed atmosphere. This
waiting area was used as a confidential area, if
required, for discussions with parents and other
professionals.
Children’s appointments were generally in age
order, youngest first, and many parents would
linger to observe slightly older children achieving
the skills their child was currently attempting.
During the appointment the children were assessed
using the GMFM; then a home exercise plan was
devised and taught to both parents and Portage
workers.
Once crawling, children continued to be seen once
every three months by the physiotherapist in clinic
until they walked, without the home visits by the
assistant. The rationale for this was that by the time
their child was crawling, parents and Portage
workers had learned and implemented the
techniques to encourage movement. The crawling
in itself would improve the child’s strength, balance
and co-ordination. This would allow the child to
achieve walking in their own time when they had
sufficiently practiced the skills needed to walk by
crawling, pulling to standing and cruising along the
furniture.
When the children had achieved walking, they were
seen annually in the clinic to give advice on
footwear, developing gross motor milestones
further, and to address queries arising from nursery
or school placement.
Close links were established with the Portage team.
Other therapy disciplines were also welcomed and
encouraged to attend the clinic appointments.
These included speech therapy, dieticians,
occupational therapy, nursery staff, teachers,
consultants and paediatricians. These professionals
attended as appropriate.
While most parents were happy to attend clinic
appointments a few found it difficult and expressed
a preference to have their child seen at home.
Reasons for this varied and included: their child
being too sick to attend clinic; respecting parents’
cultural wishes; the child becoming upset in the
clinic environment and being more compliant in
their home environment. In these cases the home
visit pathway was followed (Figure 1). Parents were
encouraged, however, to attend clinic to benefit
from the supportive environment.
Data was collected retrospectively once the child
59
Palisano et al (2001)
DS Pathway
Clients of early intervention programmes, South
Ontario, Canada. It is unclear if these children were
volunteers or a complete cohort
All children born in the area from September 2002 – September 2011.
This cohort of children, therefore reflected the wide variation of
ability in children with DS
Exclusion
10 children who did not complete the study and 2
for whom motor impairment was not determined
One child who had an additional severe motor impairment. All
children who moved away from the area before achieving walking
Number
Study
sample
Age
1.7 – 72 months
33 under 1 year at enrolment
2 – 54 months
All under 1 year at enrolment
Severity
51 – mild (42%)
6 – severe (5%)
10 – mild (31%)
6 – severe (19%)
(the criteria uses was the same as that published in the Palisano et al
study)
Test
GMFM – standard procedure for administering
GMFM used, scoring the motor behaviour actually
performed during the assessment. See Appendix 2
for results published
Selected elements of GMFM assessed:
24 – sitting
45 – crawling
69 – walking
Data
Analysis
The probability that a child could perform motor
functions by different ages was estimated using
logistic regression on the cross sectional data
Data was recorded on the basis of observation of skills as they
developed. The recording was done at 3 monthly intervals. A skill
could develop but not be recorded for up to 12 weeks
Assessors
18 Assessors (9 physiotherapists, 8 OTs, 1
Psychometrist),
children
children with DS
2 Senior Physiotherapists
Both with more than 5 years experience working with children with
DS
Table 3 – Comparison of the Palisano et al (2001) study and the DS Pathway
The Care Pathway and the Clinic
All children with DS with registerd with a GP in the
area were placed on the DS pathway (Figure 1).
An initial home visit was completed in order to
undertake a full assessment of the child, and
introduce therapy to the parents in a non-clinical
environment. The therapy pathway was discussed
and goals were set at this visit.
All children were subsequently seen at three
monthly intervals by a physiotherapist, mostly in
the clinic. Goals were reviewed regularly; advice
and treatment strategies were discussed and taught.
These were shared with the Portage workers and
incorporated into Portage targets. Two home visits
were carried out at monthly intervals between
clinics by a physiotherapy assistant until the child
was crawling. This was to reinforce the programme
in the intervening months until the next clinic.
The clinic itself was carried out in a large room.
There were three specific treatment areas arranged
around mats on the floor, which each offered a
selection of toys and therapy aids. This facilitated
ease of interaction between parents, other
professions involved with the child and the
physiotherapist. Parents could see other children
using similar positions for play that their child was
being encouraged to adopt, and interaction between
parents and peer support was actively encouraged.
Motor milestones were recorded as achieved only
when the physiotherapist actually observed the
child complete the skill. This avoided any
inconsistencies that might arise with parental
reporting.
Methodology
Participants
• All babies with DS born from 1 September 2002
until 1 March 2011 who were placed on the
new DS care pathway.
• The parents of all children born between 1st
September 2002 and 1st June 2007 involved in
the new clinic, were invited to complete the
parent questionnaire (Appendix 1). All
parents/carers were involved in the
physiotherapy pathway regardless of response
to the questionnaire.
• Two senior physiotherapists and two
assistants.
• Other professionals who attended clinics,
including occupational therapy, paediatricians
and speech and language therapy and the
Portage co-ordinator and the team of Portage
workers in Coventry
58
The approach taken in the clinic was one that
encouraged developmentally sequenced movement
patterns (Sheridan, 2008). Great emphasis was put
on achieving head control and then shoulder
stability and arm strength. This is similar to the
approach taken by Winders (1997).
Sitting was neither taught nor encouraged.
Children were given appropriate seating when twohanded activities needed to be facilitated. It was felt
that fine motor skills should not be delayed because
of a lack of sitting balance or compromised when
working on gross motor skills.
Figure 1 – The DS Pathway
The maximum number of children that could be
seen was twelve, due to constraints in room size and
availability of staff. On the few occasions that there
were more than twelve children to be reviewed, the
clinic was extended in duration to accommodate the
extra children. This enabled the therapists to work
effectively in the space and to accommodate parents
and other professionals working collaboratively
together. Each child’s Portage worker was
encouraged to attend appointments with parents
and joint targets were set. A separate waiting area
with refreshments was available which was flexible
in its use and promoted a relaxed atmosphere. This
waiting area was used as a confidential area, if
required, for discussions with parents and other
professionals.
Children’s appointments were generally in age
order, youngest first, and many parents would
linger to observe slightly older children achieving
the skills their child was currently attempting.
During the appointment the children were assessed
using the GMFM; then a home exercise plan was
devised and taught to both parents and Portage
workers.
Once crawling, children continued to be seen once
every three months by the physiotherapist in clinic
until they walked, without the home visits by the
assistant. The rationale for this was that by the time
their child was crawling, parents and Portage
workers had learned and implemented the
techniques to encourage movement. The crawling
in itself would improve the child’s strength, balance
and co-ordination. This would allow the child to
achieve walking in their own time when they had
sufficiently practiced the skills needed to walk by
crawling, pulling to standing and cruising along the
furniture.
When the children had achieved walking, they were
seen annually in the clinic to give advice on
footwear, developing gross motor milestones
further, and to address queries arising from nursery
or school placement.
Close links were established with the Portage team.
Other therapy disciplines were also welcomed and
encouraged to attend the clinic appointments.
These included speech therapy, dieticians,
occupational therapy, nursery staff, teachers,
consultants and paediatricians. These professionals
attended as appropriate.
While most parents were happy to attend clinic
appointments a few found it difficult and expressed
a preference to have their child seen at home.
Reasons for this varied and included: their child
being too sick to attend clinic; respecting parents’
cultural wishes; the child becoming upset in the
clinic environment and being more compliant in
their home environment. In these cases the home
visit pathway was followed (Figure 1). Parents were
encouraged, however, to attend clinic to benefit
from the supportive environment.
Data was collected retrospectively once the child
59
(2008). In contrast, Figure 6 demonstrates that some
children in the Palisano et al (2001) study achieved
crawling only after walking.
had been discharged from the pathway and entered
into a confidential spreadsheet indicating when
each child had been seen to achieve each milestone.
(Appendix 2).
Results
Clinic attendance
In total 264 appointments were offered to 34
children and families over the monitored period. Of
these, 90% of appointments were attended, and 10%
were not (DNA). The seven families who did not
attend were followed up and attended further
appointments.
These figures show that the clinics were well
attended and that parents were motivated to rearrange appointments that become difficult to
attend.
Findings of the questionnaire
The questionnaire (Appendix 1) was given to the 17
families and completed by 14 (82%). A target of 75%
returned questionnaires was set and achieved.
Figure 2 – Comparison of achievement of sitting: Palisano
et al (2001) cf DS Pathway
Crawling
When looking at crawling, Palisano et al (2001)
estimate that at least 25% of children with DS are
likely to walk before they have started to crawl.
Most parents found it helpful to have other parents
at the clinic, for example one parent commented
“after talking to other parents you don’t feel so isolated”.
Two thirds of parents found it helpful to have other
professionals present in the clinic.
References
Figure 6 – Achievement of motor skills: Palisano et al
(2001)
Discussion
Figure 3 – Comparison of achievement of crawling:
Palisano et al (2001) cf DS Pathway
Walking
Figure 4 compares children on the pathway to
Palisano et al (2001). It shows that the walking age
of both sets of children is very similar despite there
being a significant number of children with a more
severe type of DS in the pathway cohort.
Comparison of Motor Milestones
A summary of the age of achievement of milestones
for each child on the DS Pathway is shown in
Appendix 2.
Sitting
Figure 2 illustrates the differences in achieving
sitting between the probability of achieving sitting
at various ages estimated by Palisano et al (2001)
and the ages at which sitting was achieved by the
children on the DS pathway (Pathway). Although
the children on the pathway sat later initially, all
children were sitting by 18 months in both studies.
60
This report shows that the clinic was successful in
providing an equitable service, and promoting
involvement of other professionals within the clinic
setting. This approach could be used with other
children who have gross motor needs. The pathway
is transferable, and services with an interest in DS,
or other conditions, could use this pathway to base
a similarly successful service.
Stemming from the success of the DS clinic, working
within a clinic has been embraced and hopefully
will be expanded to other conditions. The current
clinic will continue to run and develop.
Figure 3 illustrates the ages at which children on the
pathway achieved crawling compared to the
probabilities estimated by Palisano et al (2001).
The results of the questionnaire show that all
parents felt they were involved in target setting,
understood the physiotherapy home programme
and were satisfied with their child’s achievements.
The questions about the clinic organisation showed
that parents valued the welcoming atmosphere of
the clinic and the follow-up visit carried out by the
assistant. Only one parent felt they had not been
given a choice of venue.
Figure 5 – Achievement of motor skills: DS Pathway
pathway developed and the agencies and
professionals that were invited, attended and it was
becoming holistic. Joint physiotherapy and Portage
targets were being set collaboratively with parents.
Furthermore, the therapist’s efficiency and
effectiveness was improved as the pathway
indicated clearly the input each child receives at
each stage.
Figure 4 – Comparison of achievement of walking:
Milestone achievement
Figure 5 indicates that the pathway children
achieved their milestones in the correct
developmental sequence as described by Sheridan
Children with DS can have an a-typical neurodevelopmental sequence (Sacks & Buckley, 2001).
Children who followed the DS Pathway met their
developmental milestones in the correct order.
Crawling is considered a more complex movement
pattern; with this pathway it ensures children learn
to use the more complex patterns of crawling before
moving on to walking. This is expected to give
further benefit in future years as children have
experienced and integrated the bilateral skills
learned through crawling.
Parents’ satisfaction with the clinic is reflected by
the low DNA rate to clinic. The questionnaire
indicates a high level of compliance among parents
who believe the clinic is not only useful for their
child, but also useful for their own coping strategies.
The relaxed environment created in the clinic
allowing for discussion enabled parents to voice
concerns with others who may be in a similar
position.
On reviewing the study period, it became clear that
at first the clinic was designed purely with
physiotherapy in mind. After 18 months the
Commissioning for Health Improvement (CHI), 2003.
Paediatric outpatient did not attend rates. The
Commission for Health Improvement. Available at:
http://www.chi.nhs.uk/Ratings/Trust/Indicator/indicat
orDescriptionShort.asp?indicatorId=1626. [accessed on
7.6.12 at 11.00am]
Craig B (2006). Atrioventricular septal defect: from fetus
to adult. Heart, Vol 92 (12).
Cunningham C. & Sloper P (1978). Helping your
Handicapped Baby, Human Horizons Series.
Down Syndrome Medical Interest Group UK,
Developmental milestones. adapted with permission from
Cunningham 1988 Down’s Syndrome: An Introduction for
Parents. Souvenir Press Ltd. Human Horizon Series
http://www.dsmig.org.uk/publications/pchrchdev.html
[Accessed 2006].
Haley SM (1986). Postural Reactions in Infants with Down
Syndrome: Relationship to Motor Milestone Development
and Age. Physical Therapy. Vol 66 (1).
Palisano RJ, Walter SD, Russell DJ, Rosenbaum PL, Gemus
M, Galuppi BE & Cunningham L (2001). Gross Motor
Function of Children With Down Syndrome: Creation of
Motor Growth Curves. Archives of Physical Medicine and
Rehabilitation. Vol 82.
Rauh H, Rudinger G (1987). Early Development of Down
Syndrome Children as Assessed by the Bayley Scales.
Based on posters presented at the European Conference
on developmental Psychology (Rome, 1986).
Russell D, Palisano R, Walter S, Rosenbaum P, Gemus M,
Gowland C (1998). Evaluating Motor Function in Children
61
(2008). In contrast, Figure 6 demonstrates that some
children in the Palisano et al (2001) study achieved
crawling only after walking.
had been discharged from the pathway and entered
into a confidential spreadsheet indicating when
each child had been seen to achieve each milestone.
(Appendix 2).
Results
Clinic attendance
In total 264 appointments were offered to 34
children and families over the monitored period. Of
these, 90% of appointments were attended, and 10%
were not (DNA). The seven families who did not
attend were followed up and attended further
appointments.
These figures show that the clinics were well
attended and that parents were motivated to rearrange appointments that become difficult to
attend.
Findings of the questionnaire
The questionnaire (Appendix 1) was given to the 17
families and completed by 14 (82%). A target of 75%
returned questionnaires was set and achieved.
Figure 2 – Comparison of achievement of sitting: Palisano
et al (2001) cf DS Pathway
Crawling
When looking at crawling, Palisano et al (2001)
estimate that at least 25% of children with DS are
likely to walk before they have started to crawl.
Most parents found it helpful to have other parents
at the clinic, for example one parent commented
“after talking to other parents you don’t feel so isolated”.
Two thirds of parents found it helpful to have other
professionals present in the clinic.
References
Figure 6 – Achievement of motor skills: Palisano et al
(2001)
Discussion
Figure 3 – Comparison of achievement of crawling:
Walking
Figure 4 compares children on the pathway to
Palisano et al (2001). It shows that the walking age
of both sets of children is very similar despite there
being a significant number of children with a more
severe type of DS in the pathway cohort.
Comparison of Motor Milestones
A summary of the age of achievement of milestones
for each child on the DS Pathway is shown in
Appendix 2.
Sitting
Figure 2 illustrates the differences in achieving
sitting between the probability of achieving sitting
at various ages estimated by Palisano et al (2001)
and the ages at which sitting was achieved by the
children on the DS pathway (Pathway). Although
the children on the pathway sat later initially, all
children were sitting by 18 months in both studies.
60
This report shows that the clinic was successful in
providing an equitable service, and promoting
involvement of other professionals within the clinic
setting. This approach could be used with other
children who have gross motor needs. The pathway
is transferable, and services with an interest in DS,
or other conditions, could use this pathway to base
a similarly successful service.
Stemming from the success of the DS clinic, working
within a clinic has been embraced and hopefully
will be expanded to other conditions. The current
clinic will continue to run and develop.
Figure 3 illustrates the ages at which children on the
pathway achieved crawling compared to the
probabilities estimated by Palisano et al (2001).
The results of the questionnaire show that all
parents felt they were involved in target setting,
understood the physiotherapy home programme
and were satisfied with their child’s achievements.
The questions about the clinic organisation showed
that parents valued the welcoming atmosphere of
the clinic and the follow-up visit carried out by the
assistant. Only one parent felt they had not been
given a choice of venue.
Figure 5 – Achievement of motor skills: DS Pathway
pathway developed and the agencies and
professionals that were invited, attended and it was
becoming holistic. Joint physiotherapy and Portage
targets were being set collaboratively with parents.
Furthermore, the therapist’s efficiency and
effectiveness was improved as the pathway
indicated clearly the input each child receives at
each stage.
Figure 4 – Comparison of achievement of walking:
Milestone achievement
Figure 5 indicates that the pathway children
achieved their milestones in the correct
developmental sequence as described by Sheridan
Children with DS can have an a-typical neurodevelopmental sequence (Sacks & Buckley, 2001).
Children who followed the DS Pathway met their
developmental milestones in the correct order.
Crawling is considered a more complex movement
pattern; with this pathway it ensures children learn
to use the more complex patterns of crawling before
moving on to walking. This is expected to give
further benefit in future years as children have
experienced and integrated the bilateral skills
learned through crawling.
Parents’ satisfaction with the clinic is reflected by
the low DNA rate to clinic. The questionnaire
indicates a high level of compliance among parents
who believe the clinic is not only useful for their
child, but also useful for their own coping strategies.
The relaxed environment created in the clinic
allowing for discussion enabled parents to voice
concerns with others who may be in a similar
position.
On reviewing the study period, it became clear that
at first the clinic was designed purely with
physiotherapy in mind. After 18 months the
Commissioning for Health Improvement (CHI), 2003.
Paediatric outpatient did not attend rates. The
Commission for Health Improvement. Available at:
http://www.chi.nhs.uk/Ratings/Trust/Indicator/indicat
orDescriptionShort.asp?indicatorId=1626. [accessed on
7.6.12 at 11.00am]
Craig B (2006). Atrioventricular septal defect: from fetus
to adult. Heart, Vol 92 (12).
Cunningham C. & Sloper P (1978). Helping your
Handicapped Baby, Human Horizons Series.
Down Syndrome Medical Interest Group UK,
Developmental milestones. adapted with permission from
Cunningham 1988 Down’s Syndrome: An Introduction for
Parents. Souvenir Press Ltd. Human Horizon Series
http://www.dsmig.org.uk/publications/pchrchdev.html
[Accessed 2006].
Haley SM (1986). Postural Reactions in Infants with Down
Syndrome: Relationship to Motor Milestone Development
and Age. Physical Therapy. Vol 66 (1).
Palisano RJ, Walter SD, Russell DJ, Rosenbaum PL, Gemus
M, Galuppi BE & Cunningham L (2001). Gross Motor
Function of Children With Down Syndrome: Creation of
Motor Growth Curves. Archives of Physical Medicine and
Rehabilitation. Vol 82.
Rauh H, Rudinger G (1987). Early Development of Down
Syndrome Children as Assessed by the Bayley Scales.
Based on posters presented at the European Conference
on developmental Psychology (Rome, 1986).
Russell D, Palisano R, Walter S, Rosenbaum P, Gemus M,
Gowland C (1998). Evaluating Motor Function in Children
61
with Down Syndrome; Validity of the GMFM. Dev Med
Child Neurol, 40:693-701.
Russell, D.J., Rosenbaum, P.L, Avery, L. M., Lane, M. 2002
Gross Motor Function Measure User’s Manual 2nd
edition. Mac-Keith Press.
Sacks B & Buckley S (2001). An overview of development
of infants with Down Syndrome (0-5 years). Down
Syndrome Issues and Information, available online at:
http://www.downsyndrome.org/information/development/early/.
[accessed on 7.6.12 at 11.40].
Sacks, B. & Buckley, S. 2003. Motor Development for
individuals with Down Syndrome – An Overview. Down
Syndrome Education, available online:
http://www.downsyndrome.org/information/motor/overview/. [accessed
on 7.6.12 at 1.29pm]
Q1
Were you given a choice of
attending the Review Clinic or
having a home visit ?
Q2
Have you found it helpful to have
the Technical Instructor visit you at
home to reinforce the exercises?
Q3
Are you satisfied with your child’s
progress with their movement
skills ?
Q4
a) Did you feel you fully
understood the physiotherapy
programme ?
b) Did you feel you were fully
involved when the targets were set
?
Q5
Did you find the staff and the
atmosphere at the clinic welcoming
?
Q6
Was it helpful or unhelpful to have
therapists from other disciplines
and teachers there ?
Q7
Do you have any comments or
suggestions on how we could make
this clinic better for you or your
child ?
62
No
Age at achievement of milestones for children on the Coventry DS Pathway
SITTING (months)
CRAWLING (months)
WALKING (months)
Sheridan MD (2008). From Birth to Five Years – Children’s
Developmental Progress. Routledge.
1
13
18
25
2
9
23
27
Winders PC (1997). Physical Therapy in Down Syndrome:
A Guide for Parents and Professionals. Woodbine House.
3
21
24
36
4
12
23
24
5
15
16
29
6
20
29
38
7
19
28
36
8
20
33
38
9
12
17
22
10
23
29
54
11
15
16
27
12
15
24
39
13
15
16
31
14
14
24
29
15
20
26
38
16
13
22
23
17
7
11
18
18
9
14
21
19
12
14
26
20
9
17
33
21
13
22
29
22
17
20
23
23
24
34
41
24
14
15
21
25
10
16
21
26
15
15
21
27
9
16
25
28
18
26
36
29
16
25
29
30
18
24
35
31
17
23
33
32
14
18
24
33
10
10
17
34
11
19
28
PARENTS SURVEY – DATA COLLECTION SHEET
Yes
Appendix 2
Child
Appendix 1
Question
Other
Comment
63
with Down Syndrome; Validity of the GMFM. Dev Med
Child Neurol, 40:693-701.
Russell, D.J., Rosenbaum, P.L, Avery, L. M., Lane, M. 2002
Gross Motor Function Measure User’s Manual 2nd
edition. Mac-Keith Press.
Sacks B & Buckley S (2001). An overview of development
of infants with Down Syndrome (0-5 years). Down
Syndrome Issues and Information, available online at:
http://www.downsyndrome.org/information/development/early/.
[accessed on 7.6.12 at 11.40].
Sacks, B. & Buckley, S. 2003. Motor Development for
individuals with Down Syndrome – An Overview. Down
Syndrome Education, available online:
http://www.downsyndrome.org/information/motor/overview/. [accessed
on 7.6.12 at 1.29pm]
Q1
Were you given a choice of
attending the Review Clinic or
having a home visit ?
Q2
Have you found it helpful to have
the Technical Instructor visit you at
home to reinforce the exercises?
Q3
Are you satisfied with your child’s
progress with their movement
skills ?
Q4
a) Did you feel you fully
understood the physiotherapy
programme ?
b) Did you feel you were fully
involved when the targets were set
?
Q5
Did you find the staff and the
atmosphere at the clinic welcoming
?
Q6
Was it helpful or unhelpful to have
therapists from other disciplines
and teachers there ?
Q7
Do you have any comments or
suggestions on how we could make
this clinic better for you or your
child ?
62
No
Age at achievement of milestones for children on the Coventry DS Pathway
SITTING (months)
CRAWLING (months)
WALKING (months)
Sheridan MD (2008). From Birth to Five Years – Children’s
Developmental Progress. Routledge.
1
13
18
25
2
9
23
27
Winders PC (1997). Physical Therapy in Down Syndrome:
A Guide for Parents and Professionals. Woodbine House.
3
21
24
36
4
12
23
24
5
15
16
29
6
20
29
38
7
19
28
36
8
20
33
38
9
12
17
22
10
23
29
54
11
15
16
27
12
15
24
39
13
15
16
31
14
14
24
29
15
20
26
38
16
13
22
23
17
7
11
18
18
9
14
21
19
12
14
26
20
9
17
33
21
13
22
29
22
17
20
23
23
24
34
41
24
14
15
21
25
10
16
21
26
15
15
21
27
9
16
25
28
18
26
36
29
16
25
29
30
18
24
35
31
17
23
33
32
14
18
24
33
10
10
17
34
11
19
28
PARENTS SURVEY – DATA COLLECTION SHEET
Yes
Appendix 2
Child
Appendix 1
Question
Other
Comment
63
The Impact of an Integrated Education / Therapy Approach on GMFM-66 Scores in a
Child with Cerebral Palsy (GMFCS level IV)
Sara Kay BSc MSc MCSP
Percy Hedley Foundation
Author’s email: s.kay@percyhedley.org.uk
S. Kay / APCP Journal Volume 5 Number 1 (2014) 64-69
data compared year on year. A superficial review of
the data revealed that most students were
progressing beyond the age-90 expectation but a
more detailed investigation was required. This case
study will retrospectively evaluate the impact of an
integrated approach on the motor skill development
of a child with dyskinetic and dystonic cerebral
palsy (GMFCS IV - self mobility with limitations,
may use powered mobility) between ages 3 and 12
years (assessed using the GMFM-88).
________________________________________________________________________________
Background
Introduction
The Gross Motor Function Measure (GMFM) is
accepted worldwide as an evidence-based outcome
measure of motor function in children with cerebral
palsy (CP) (Srsen, 2012; Debuse and Brace, 2011;
Russell et al, 2000). The development of the gross
motor reference curves in conjunction with the
Gross Motor Classification System (GMFCS)
provide a standardised benchmark on which
therapy can be evaluated for children with CP
(Rosenbaum et al, 2002). The reference curves
assume a GMFM-66 score of zero at birth and
indicate the age that motor skills begin to plateau
also known as the age-90 values (the age where 90%
of motor skills are achieved). For GMFCS levels I to
III the age-90 value is a range of age values due to
high variation in those levels, but there are
definitive ages for GMFCS levels IV and V
(Rosenbaum et al, 2002). For a child of GMFCS level
IV (Figure 1) the age 90 value is 3 years 6 months
(Rosenbaum et al. 2002). The reference curves
determine if progress is average or not.
The case subject attends a school that adopts an
integrated education/therapy approach with on-site
therapy teams following the philosophy of
conductive education (CE). The school routinely
completes the GMFM on an annual basis with the
The case subject is a child with dyskinetic and
dystonic cerebral palsy (GMFCS IV) who suffers
from asthma.
Head and trunk control are affected with low
central tone and mild spasticity in all four limbs.
There is an asymmetric presentation of tone and
control with the left lower limb affected more than
the right and the right upper limb affected more
than the left. The case subject drives a powered
wheelchair (T-bar control in a guided ‘+’ shaped
grid) and takes steps with a rollator and facilitation
at the pelvis (wearing arm gaiters). The aids used
are arm and leg gaiters and fixed, rigid ankle foot
orthoses (AFOs). Communication is through a
symbol book, vocalisations, gestures and a voice
output communication aid (accessed through a
head switch). There is good cognitive function,
internal motivation and a supportive family. This
subject was selected as, unlike many other students,
the case subject has not undergone any surgery, had
any botulinum toxin administered, and does not
take any muscle relaxant medication. This can be
described as medically ‘treatment naïve’ with
outcomes being related to therapy input and natural
progression rather than medical interventions.
Integrated working has been defined by the
Children’s Workforce Development Council
(CWDC) as ‘the people supporting the child working
together effectively to put the child at the centre, meet
their needs and improve their lives’ (CWDC, 2008). The
concept of integrated therapy is defined as
‘educational and therapy goals developed through joint
assessment, planning, implementation and evaluation’
(Giangreco, 1986). The perceived benefits of
integrated therapy include having multiple sources
of knowledge, development of interdisciplinary
knowledge through role blurring, reduced
replication, reduced isolation, better links, a broader
perspective and most importantly a better outcome
for the child and family (Giangreco et al, 1991).
Figure 1 – GMFM-66 reference curves (GMFCS IV)
64
The integrated approach at the case subject’s school
encompasses the planning, management and
delivery of a holistic educational approach
following the philosophy of CE. The incorporation
of therapy into the daily routine ensures that there
is an underlying level of all three therapies
(physiotherapy, occupational therapy and speech
and language therapy) at all times. Studies have
found that the learning environment is key to motor
skill development, with varied and frequent
practise as part of a daily routine pivotal in the
learning process (Palisano, 2006). Integrated
therapy is an ideal scenario, however there are
circumstances whereby this approach alone is
insufficient to meet a child’s physical needs with
additional direct input required. These special
circumstances include post-botox, post-surgery,
post-growth spurt or an unexpected loss of skills.
Additional intermittent intensive physiotherapy
was delivered as this is deemed a more effective
method of administering therapy in children with
CP than the continuous low level therapy
(Christiansen & Lange, 2008; Trahan & Malouin,
2002). This approach is similar to periodisation of
training used in sport where the organising of
resistance work into varying intensities and
volumes reduces the likelihood of overtraining and
staleness from overfamiliarity (McArdle et al, 2000).
In this case study the direct therapy was functional
strength training implemented at key times, which
were frequently post growth spurt. The rationale
for this additional therapy stems from the growing
evidence base in the use of strength training in the
management of all five GMFCS levels of CP
(Sorsdahl et al, 2010; Morton et al, 2005; Blundell et
al, 2003; Trahan & Malouin, 2003; Dodd et al, 2002).
There are several noted causes of weakness and
deformity in children with CP. These include:
• reduced descending neural (excitatory) drive;
• damage to inhibitory tracts;
• failure to recruit high threshold motor units;
• fibre loss;
• Type I muscle fibre predominance;
• sarcopenia;
• muscle belly shortening;
• chronic denervation of fast muscle fibres;
• reduced selective control;
• cross innervation of axons (co-contraction);
• altered biomechanical levers (reduced
efficiency);
• increased volume of connective tissue;
• reduced muscle size (volume and length);
• reduced fibre length
(Sorsdahl et al, 2010; Barrett & Lichtwark, 2010;
Shortland, 2009; Morton et al, 2005; Blundell et al,
2003; Darrah et al, 2003; Elder et al, 2003).
65
The Impact of an Integrated Education / Therapy Approach on GMFM-66 Scores in a
Child with Cerebral Palsy (GMFCS level IV)
Sara Kay BSc MSc MCSP
Percy Hedley Foundation
Author’s email: s.kay@percyhedley.org.uk
data compared year on year. A superficial review of
the data revealed that most students were
progressing beyond the age-90 expectation but a
more detailed investigation was required. This case
study will retrospectively evaluate the impact of an
integrated approach on the motor skill development
of a child with dyskinetic and dystonic cerebral
palsy (GMFCS IV - self mobility with limitations,
may use powered mobility) between ages 3 and 12
years (assessed using the GMFM-88).
________________________________________________________________________________
Background
Introduction
The Gross Motor Function Measure (GMFM) is
accepted worldwide as an evidence-based outcome
measure of motor function in children with cerebral
palsy (CP) (Srsen, 2012; Debuse and Brace, 2011;
Russell et al, 2000). The development of the gross
motor reference curves in conjunction with the
Gross Motor Classification System (GMFCS)
provide a standardised benchmark on which
therapy can be evaluated for children with CP
(Rosenbaum et al, 2002). The reference curves
assume a GMFM-66 score of zero at birth and
indicate the age that motor skills begin to plateau
also known as the age-90 values (the age where 90%
of motor skills are achieved). For GMFCS levels I to
III the age-90 value is a range of age values due to
high variation in those levels, but there are
definitive ages for GMFCS levels IV and V
(Rosenbaum et al, 2002). For a child of GMFCS level
IV (Figure 1) the age 90 value is 3 years 6 months
(Rosenbaum et al. 2002). The reference curves
determine if progress is average or not.
The case subject attends a school that adopts an
integrated education/therapy approach with on-site
therapy teams following the philosophy of
conductive education (CE). The school routinely
completes the GMFM on an annual basis with the
The case subject is a child with dyskinetic and
dystonic cerebral palsy (GMFCS IV) who suffers
from asthma.
Head and trunk control are affected with low
central tone and mild spasticity in all four limbs.
There is an asymmetric presentation of tone and
control with the left lower limb affected more than
the right and the right upper limb affected more
than the left. The case subject drives a powered
wheelchair (T-bar control in a guided ‘+’ shaped
grid) and takes steps with a rollator and facilitation
at the pelvis (wearing arm gaiters). The aids used
are arm and leg gaiters and fixed, rigid ankle foot
orthoses (AFOs). Communication is through a
symbol book, vocalisations, gestures and a voice
output communication aid (accessed through a
head switch). There is good cognitive function,
internal motivation and a supportive family. This
subject was selected as, unlike many other students,
the case subject has not undergone any surgery, had
any botulinum toxin administered, and does not
take any muscle relaxant medication. This can be
described as medically ‘treatment naïve’ with
outcomes being related to therapy input and natural
progression rather than medical interventions.
Integrated working has been defined by the
Children’s Workforce Development Council
(CWDC) as ‘the people supporting the child working
together effectively to put the child at the centre, meet
their needs and improve their lives’ (CWDC, 2008). The
concept of integrated therapy is defined as
‘educational and therapy goals developed through joint
assessment, planning, implementation and evaluation’
(Giangreco, 1986). The perceived benefits of
integrated therapy include having multiple sources
of knowledge, development of interdisciplinary
knowledge through role blurring, reduced
replication, reduced isolation, better links, a broader
perspective and most importantly a better outcome
for the child and family (Giangreco et al, 1991).
Figure 1 – GMFM-66 reference curves (GMFCS IV)
64
The integrated approach at the case subject’s school
encompasses the planning, management and
delivery of a holistic educational approach
following the philosophy of CE. The incorporation
of therapy into the daily routine ensures that there
is an underlying level of all three therapies
(physiotherapy, occupational therapy and speech
and language therapy) at all times. Studies have
found that the learning environment is key to motor
skill development, with varied and frequent
practise as part of a daily routine pivotal in the
learning process (Palisano, 2006). Integrated
therapy is an ideal scenario, however there are
circumstances whereby this approach alone is
insufficient to meet a child’s physical needs with
additional direct input required. These special
circumstances include post-botox, post-surgery,
post-growth spurt or an unexpected loss of skills.
Additional intermittent intensive physiotherapy
was delivered as this is deemed a more effective
method of administering therapy in children with
CP than the continuous low level therapy
(Christiansen & Lange, 2008; Trahan & Malouin,
2002). This approach is similar to periodisation of
training used in sport where the organising of
resistance work into varying intensities and
volumes reduces the likelihood of overtraining and
staleness from overfamiliarity (McArdle et al, 2000).
In this case study the direct therapy was functional
strength training implemented at key times, which
were frequently post growth spurt. The rationale
for this additional therapy stems from the growing
evidence base in the use of strength training in the
management of all five GMFCS levels of CP
(Sorsdahl et al, 2010; Morton et al, 2005; Blundell et
al, 2003; Trahan & Malouin, 2003; Dodd et al, 2002).
There are several noted causes of weakness and
deformity in children with CP. These include:
• reduced descending neural (excitatory) drive;
• damage to inhibitory tracts;
• failure to recruit high threshold motor units;
• fibre loss;
• Type I muscle fibre predominance;
• sarcopenia;
• muscle belly shortening;
• chronic denervation of fast muscle fibres;
• reduced selective control;
• cross innervation of axons (co-contraction);
• altered biomechanical levers (reduced
efficiency);
• increased volume of connective tissue;
• reduced muscle size (volume and length);
• reduced fibre length
(Sorsdahl et al, 2010; Barrett & Lichtwark, 2010;
Shortland, 2009; Morton et al, 2005; Blundell et al,
2003; Darrah et al, 2003; Elder et al, 2003).
65
Studies are inconclusive regarding the ratio of
muscle fibre type, with some evidence that in
GMFCS levels III-V there is a predominance of type
I muscle fibres with an increased number of high
threshold motor units (Barrett & Lichtwark, 2010).
Muscle biopsies have found that children with CP
have 50-70% muscle volume of weight-matched
typically developing peers (Shortland, 2009). This
has implications when considering the frequency,
rate and dose of physiotherapy.
According to McArdle et al, (2000) programmes
designed to develop type II muscle fibres will
increase muscle hypertrophy, volume, and power.
Muscle mass (and consequently power) increases
through muscle hypertrophy, however size
independent changes can also occur, these include
increased motor unit firing rate, recruitment and
conduction velocity, and changes to fibre
architecture (Rowland, 2005). Therefore despite the
exact mechanism of change being unknown when
completing resistance training, all of the potential
changes are pertinent to the child with CP.
Method
Consent was obtained (in written format from the
parents and verbally using the VOCA from the case
subject to use the anonymised data for research
purposes. A battery of assessments were carried out
at least annually in line with statutory reviews
(range of motion, motor control, muscle power,
postural assessment, GMFM-88 and a video of
skills).
The archived raw data from the annual GMFM-88
between the ages of 3 and 12 years (2003-2012) was
inputted into the Gross Motor Ability Estimator on
the CD issued with the GMFM instruction manual
(Russell et al, 2002). The data being used was
collected through testing by one Band 8
physiotherapist (series 1-4) and one Band 7
physiotherapist (series 5-10), both having had
reliability training as part of CPD. A case summary
report was generated and total score data evaluated
against GMFM tabulated percentiles data (Hanna et
al, 2008a).
Treatment
A typical week included participation in a
differentiated physical education lesson, a
Halliwick-based pool session, four CE motor
programmes and from aged 7 years intermittent
intensive blocks of functional strength training with
the physiotherapist. From the data obtained
through the assessments, a functional strength
66
programme was devised aimed at addressing
muscle imbalance, increasing motor control,
developing balance and increasing the quality and
repertoire of motor skills. The programme adhered
to the four training principles of: overload,
specificity, progression and regression (Rowland,
2005).
The activities were determined through analysis of
the muscle power assessment data and designed to
address the muscle imbalance specifically at the
appropriate resistance level, range of movement and
type of muscle activity (antigravity/gravity assisted,
full or partial range of movement, concentric/
eccentric and isotonic/isometric/isokinetic). Once
activities were set, maximal scores were assessed for
each activity. The programme was set at 65% of
maximum scores (60-100% is the strength training
zone) per set and three sets per session to ensure
overload of each muscle. For example if eleven sit
to stand (holding a ladder) were completed in the
maximal test, then 65% would be seven repetitions
per set and three sets per session. Sessions were
twice weekly for 6-7 weeks, three times per year.
The rationale for the 6-7 week training blocks is the
physiology of muscle regeneration (every 6 weeks).
An increase in load every two weeks ensured that
the overload and progression principles were
adhered to and ensured regression did not occur.
This increase in load varied between increasing
repetition numbers and increasing resistance.
Case Study
3rd centile
5th centile
10th centile
15th centile
20th centile
25th centile
30th centile
35th centile
40th centile
45th centile
50th centile
55th centile
60th centile
65th centile
70th centile
75th centile
80th centile
85th centile
90th centile
95th centile
97th centile
3y9
4y3
5y9
6y9
7y6
8y9
9y6
10y6
11y9
12y0
24.66
23.5
25.9
29.3
31.3
32.8
34
35.1
36
36.9
37.7
38.5
39.2
40
40.7
41.5
42.4
43.3
44.3
45.5
47.3
48.4
29.31
24
26.7
30.2
32.3
33.8
35.1
36.2
37.2
38.1
38.9
39.8
40.5
41.3
42.1
42.9
43.8
44.7
45.8
47.1
48.9
50.1
35.26
25.3
28.1
31.8
34.1
35.7
37.1
38.3
39.3
40.3
41.2
42.1
42.9
43.7
44.6
45.5
46.4
47.4
48.5
49.9
51.9
53.1
36.79
25.6
28.3
32
34.2
35.9
37.3
38.4
39.5
40.5
41.4
42.3
43.2
44
44.9
45.8
46.8
47.8
49
50.4
52.4
53.7
37.43
25.7
28.3
31.8
35
35.6
37
38.2
39.2
40.2
41.1
42
42.9
43.8
44.7
45.6
46.6
47.7
48.9
50.4
52.5
53.9
41.79
25.8
27.9
31.1
33.1
34.7
36
37.1
38.2
39.2
40.1
41
41.9
42.9
43.8
44.8
45.8
46.9
48.2
49.9
52.2
53.7
41.14
25.6
27.6
30.5
32.4
33.9
35.2
36.4
37.4
38.4
39.3
40.3
41.2
42.1
43.1
44.1
45.2
46.4
47.7
49.4
52
53.6
42.44
25.2
27
29.6
31.4
32.9
34.1
35.2
36.3
37.3
38.2
39.1
40.1
41
42
43.1
44.2
45.5
46.9
48.8
51.6
53.4
43.26
24.7
26.3
28.7
30.4
31.8
33
34.1
35.1
36.1
37
38
39
39.9
41
42.1
43.3
44.7
46.3
48.3
51.5
53.5
45.14
25.7
26.2
28.6
30.2
31.6
32.8
33.9
34.9
35.9
36.8
37.8
38.8
39.8
40.8
41.9
43.2
44.6
46.2
48.3
51.5
53.7
Table 1 - Age matched data from case subject and GMFM reference curves (Hanna et al. 2008a)
Results
The tabulated reference data (Hanna et al, 2008a)
was age matched to the case being evaluated to the
nearest 3 month interval (Table 1). The anomaly in
the reference curve created for this case study is the
lack of data beyond 12 years 0 months. For the
purposes of this case study the data for 12 years 0
months has been used as a comparison for the
assessment completed at 12 years 6 months.
When the case study data is compared to the
reference curves, the trajectory does not follow that
of any of the percentile curvies (Figue 2). The shape
of the case sudy curve is markedly different to the
shape of the reference curves and is still increasing
at the age of 12 years. The starting point is between
the 3rd and 5th centile at the age of 3 years 9 months
and the end point is just above the 80th centile at
aged 12 years. There is a continued upward trend in
the scores indicating a plateau point may not have
been reached. The introduction of intermittent
intensive physiotherapy at the age of 7 years
resulted in a sharp increase in total score, followed
by a more steady rate.
Figure 2 - GMFM-66 age matched reference curves (GMFCS IV) plus case subject
67
Studies are inconclusive regarding the ratio of
muscle fibre type, with some evidence that in
GMFCS levels III-V there is a predominance of type
I muscle fibres with an increased number of high
threshold motor units (Barrett & Lichtwark, 2010).
Muscle biopsies have found that children with CP
have 50-70% muscle volume of weight-matched
typically developing peers (Shortland, 2009). This
has implications when considering the frequency,
rate and dose of physiotherapy.
According to McArdle et al, (2000) programmes
designed to develop type II muscle fibres will
increase muscle hypertrophy, volume, and power.
Muscle mass (and consequently power) increases
through muscle hypertrophy, however size
independent changes can also occur, these include
increased motor unit firing rate, recruitment and
conduction velocity, and changes to fibre
architecture (Rowland, 2005). Therefore despite the
exact mechanism of change being unknown when
completing resistance training, all of the potential
changes are pertinent to the child with CP.
Method
Consent was obtained (in written format from the
parents and verbally using the VOCA from the case
subject to use the anonymised data for research
purposes. A battery of assessments were carried out
at least annually in line with statutory reviews
(range of motion, motor control, muscle power,
postural assessment, GMFM-88 and a video of
skills).
The archived raw data from the annual GMFM-88
between the ages of 3 and 12 years (2003-2012) was
inputted into the Gross Motor Ability Estimator on
the CD issued with the GMFM instruction manual
(Russell et al, 2002). The data being used was
collected through testing by one Band 8
physiotherapist (series 1-4) and one Band 7
physiotherapist (series 5-10), both having had
reliability training as part of CPD. A case summary
report was generated and total score data evaluated
against GMFM tabulated percentiles data (Hanna et
al, 2008a).
Treatment
A typical week included participation in a
differentiated physical education lesson, a
Halliwick-based pool session, four CE motor
programmes and from aged 7 years intermittent
intensive blocks of functional strength training with
the physiotherapist. From the data obtained
through the assessments, a functional strength
66
programme was devised aimed at addressing
muscle imbalance, increasing motor control,
developing balance and increasing the quality and
repertoire of motor skills. The programme adhered
to the four training principles of: overload,
specificity, progression and regression (Rowland,
2005).
The activities were determined through analysis of
the muscle power assessment data and designed to
address the muscle imbalance specifically at the
appropriate resistance level, range of movement and
type of muscle activity (antigravity/gravity assisted,
full or partial range of movement, concentric/
eccentric and isotonic/isometric/isokinetic). Once
activities were set, maximal scores were assessed for
each activity. The programme was set at 65% of
maximum scores (60-100% is the strength training
zone) per set and three sets per session to ensure
overload of each muscle. For example if eleven sit
to stand (holding a ladder) were completed in the
maximal test, then 65% would be seven repetitions
per set and three sets per session. Sessions were
twice weekly for 6-7 weeks, three times per year.
The rationale for the 6-7 week training blocks is the
physiology of muscle regeneration (every 6 weeks).
An increase in load every two weeks ensured that
the overload and progression principles were
adhered to and ensured regression did not occur.
This increase in load varied between increasing
repetition numbers and increasing resistance.
Case Study
3rd centile
5th centile
10th centile
15th centile
20th centile
25th centile
30th centile
35th centile
40th centile
45th centile
50th centile
55th centile
60th centile
65th centile
70th centile
75th centile
80th centile
85th centile
90th centile
95th centile
97th centile
3y9
4y3
5y9
6y9
7y6
8y9
9y6
10y6
11y9
12y0
24.66
23.5
25.9
29.3
31.3
32.8
34
35.1
36
36.9
37.7
38.5
39.2
40
40.7
41.5
42.4
43.3
44.3
45.5
47.3
48.4
29.31
24
26.7
30.2
32.3
33.8
35.1
36.2
37.2
38.1
38.9
39.8
40.5
41.3
42.1
42.9
43.8
44.7
45.8
47.1
48.9
50.1
35.26
25.3
28.1
31.8
34.1
35.7
37.1
38.3
39.3
40.3
41.2
42.1
42.9
43.7
44.6
45.5
46.4
47.4
48.5
49.9
51.9
53.1
36.79
25.6
28.3
32
34.2
35.9
37.3
38.4
39.5
40.5
41.4
42.3
43.2
44
44.9
45.8
46.8
47.8
49
50.4
52.4
53.7
37.43
25.7
28.3
31.8
35
35.6
37
38.2
39.2
40.2
41.1
42
42.9
43.8
44.7
45.6
46.6
47.7
48.9
50.4
52.5
53.9
41.79
25.8
27.9
31.1
33.1
34.7
36
37.1
38.2
39.2
40.1
41
41.9
42.9
43.8
44.8
45.8
46.9
48.2
49.9
52.2
53.7
41.14
25.6
27.6
30.5
32.4
33.9
35.2
36.4
37.4
38.4
39.3
40.3
41.2
42.1
43.1
44.1
45.2
46.4
47.7
49.4
52
53.6
42.44
25.2
27
29.6
31.4
32.9
34.1
35.2
36.3
37.3
38.2
39.1
40.1
41
42
43.1
44.2
45.5
46.9
48.8
51.6
53.4
43.26
24.7
26.3
28.7
30.4
31.8
33
34.1
35.1
36.1
37
38
39
39.9
41
42.1
43.3
44.7
46.3
48.3
51.5
53.5
45.14
25.7
26.2
28.6
30.2
31.6
32.8
33.9
34.9
35.9
36.8
37.8
38.8
39.8
40.8
41.9
43.2
44.6
46.2
48.3
51.5
53.7
Table 1 - Age matched data from case subject and GMFM reference curves (Hanna et al. 2008a)
Results
The tabulated reference data (Hanna et al, 2008a)
was age matched to the case being evaluated to the
nearest 3 month interval (Table 1). The anomaly in
the reference curve created for this case study is the
lack of data beyond 12 years 0 months. For the
purposes of this case study the data for 12 years 0
months has been used as a comparison for the
assessment completed at 12 years 6 months.
When the case study data is compared to the
reference curves, the trajectory does not follow that
of any of the percentile curvies (Figue 2). The shape
of the case sudy curve is markedly different to the
shape of the reference curves and is still increasing
at the age of 12 years. The starting point is between
the 3rd and 5th centile at the age of 3 years 9 months
and the end point is just above the 80th centile at
aged 12 years. There is a continued upward trend in
the scores indicating a plateau point may not have
been reached. The introduction of intermittent
intensive physiotherapy at the age of 7 years
resulted in a sharp increase in total score, followed
by a more steady rate.
Figure 2 - GMFM-66 age matched reference curves (GMFCS IV) plus case subject
67
Discussion
There is a growing body of knowledge of the long
term progression of motor skills in children with CP.
The GMFM and the reference curves are seen as the
‘gold standard’ of motor assessments for children
with CP due to their established validity and
reliability (Ko & Kim, 2012; Brunton & Bartlett, 2011;
Russell et al, 2000). A large quantity of data was
used to create the reference curves (657 children)
and they indicate an age-90 value of 3 years 6
months for GMFCS IV, a peak of ability between the
ages of 6-7 years, a plateau, followed by a reduction
in abilities (Hanna et al, 2008a; Hanna et al, 2008b;
Odman & Oberg, 2005; Harries et al, 2004;
Rosenbaum et al, 2002). The trend of scores after 6-7
years of age is a reduction across most percentiles,
suggesting that the score at 12 years 0 months is
likely to be an over-estimation of the actual
reference curve at 12 years 6 months.
If a lack of therapy had been significant in the preschool years then it would be expected that there
would be a steep rise in scores initially when
accessing an integrated approach with a subsequent
plateau effect. The effect observed is a constant
steady increase with a sharper rise following the
introduction of intermittent intensive
physiotherapy. Figure 2 shows that that the
trajectory of the case subject’s curve differs from the
reference curves that are an indication of the natural
progression usually observed for GMFCS IV. In the
GMFM-66 there is removal of many lower level
items therefore there is reduced potential for change
in GMFCS levels IV and V compared to the GMFM88.
The subject experienced low level continuous
activity (integrated therapy) and intermittent
intensive blocks. These two activity types together
offer a plethora of physiological benefits that can
address some of the issues affecting motor function
in children with CP. The physiological benefits of
intermittent intensive therapy are increased
resistance to fatigue, increased hypertrophy,
increased muscle power and increased recruitment
of higher threshold motor units. Low level
continuous activity offers the benefits of increasing
capillary density, number of mitochondria,
endurance, reducing muscle mass and converting
fast-slow twitch fibres (McArdle et al, 2000).
A child with CP faces a multitude of challenges
including reduced descending neural (excitatory)
drive, damage to inhibitory tracts, failure to recruit
high threshold motor units, fibre loss, type I muscle
fibre predominance, sarcopenia, muscle belly
shortening, chronic denervation of fast muscle
fibres, reduced selective control, cross innervation of
68
axons (co-contraction), altered biomechanical levers
(reduced efficiency), increased volume of connective
tissue, reduced muscle size (volume and length) and
reduced fibre length (Sorsdahl et al, 2010; Barrett &
Lichtwark, 2010; Shortland, 2009; Morton, et al,
2005; Blundell et al, 2003; Darrah et al, 2003; Elder et
al, 2003). The two approaches combined appear to
have contributed to a greater than average increase
in GMFM scores (Figure 2).
This evaluation shows that the integrated approach
in this case has led to a rate of motor skill
development beyond average expectation between
the ages of 3 and 12 years as compared with the
reference curves. The unique characteristics of this
case subject regarding the lack of medical
intervention create an atypical example of progress
and similar children will be sparse in the average
caseload. The extent of any effect in other children
will be dependent on the type of CP, dose of muscle
relaxants, frequency and type of surgery and
number of episodes of botox injections. This case
subject was selected having not experienced any of
these variables allowing for evaluation of the effect
of therapy. Despite the relative purity of the subject,
the principles of training and physiology on which
the training was based apply to any child with CP
and associated motor impairment.
Conclusion
Based on this case study it is suggested that an
integrated approach facilitates a longer period of
increasing skills than average (compared to the
reference curves). It is unclear whether this altered
curve trajectory will progress to a subsequent
increase in function, if the end point will be
unchanged at 18 years of age, or whether
integration merely slows the process of
plateau/decline.
Further analysis of a larger sample of GMFCS IV,
and across other GMFCS classifications will add
credibility and substance to the argument that an
integrated approach could maximise motor ability.
It will be of scientific interest to discover whether
this case subject will: return to the 3rd centile as an
adult (and the psychological impact of this); remain
on the 80th centile; or somewhere between the two.
There is little data on strength training in GMFCS
levels III, IV and V, therefore this adds to the
growing evidence base.
Blundell SW, Shepherd RB, Dean CM, & Adams RD
(2003). Functional strength training in cerebral palsy: a
pilot study of a group circuit training class for children
aged 4-8 years. Clinical Rehabilitation, 17, p. 48-57.
Brunton LK & Bartlett DJ (2011). Validity and Reliability of
Two Abbreviated Versions of the Gross Motor Function
Measure. Physical Therapy, 91, p577-588.
Function Measure (GMFM-88). Israeli Medical Association
Journal, 6, p.408-411.
Ko I, & Kim M (2012). Inter-rater reliability of the KGMFM-88 and GMPM for children with Cerebral Palsy.
Annals of Rehabilitation Medicine, 36, p. 233-239.
McArdle WD, McArdle FI, Katch VL (2000). Essentials of
Exercise Physiology. Lippincott, Willimas & Wilkins,
London, p.389-424.
Children’s Workforce Development Council (2008).
Integrated working. London
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30.8.12] www.ecm.gov.uk [accessed 30.8.12]
Morton J, Brownlee M, & McFadyen AK (2005). The
effects of progressive resistance training for children with
cerebral palsy, Clinical Rehabilitation, 19 (1), pp. 283-289.
Christiansen AS & Lange C (2008). Intermittent versus
continuous physiotherapy in children with cerebral palsy.
Developmental Medicine and Child Neurology, 50 (4), P. 290293.
Odman P, & Oberg B (2005). Effectiveness of intensive
training for children with cerebral palsy-a comparison
between child and youth rehabilitation and conductive
education. Journal of Rehabilitation Medicine, 37, p. 263-270.
Darrah J, Watkins B, Chen L, & Bonin C (2003). Effects of
Conductive Education Intervention for Children with a
Diagnosis of Cerebral Palsy: An AACPDM Evidence
Report. AACPDM Database of Evidence Reports. p1-34.
Palisano RJ (2006). A collaborative Model of Service
Delivery for Children with Movement Disorders: A
Framework for Evidence-Based Decision Making.
Physical Therapy, 86, p. 1295-1305.
Debuse D & Brace H (2011). Outcome measures of activity
for children with cerebral palsy: A systematic review,
Pediatric Physical Therapy, 23 (3), pp.221-231.
Rosenbaum PL, Walter SD, Hanna SE, Palisano RJ, Russell
DJ, Raina P, Wood E, Bartlett DJ, Galuppi BE (2009).
Prognosis for gross motor function in cerebral palsy, The
Journal of the American Medical Association, 288 (11), pp.
1357-1363.
Dodd KJ, Taylor NF, & Damiano DL (2002). A systematic
review of the effectiveness of strength-training programs
for people with cerebral palsy. Archives of Physical
Medicine and Rehabilitation, 83 (8), p. 1157-1164.
Elder GCB, Kirk J, Stewart G, Cook K, Weir D, Marshall A,
& Leahey L (2003). Contributing factors to muscle
weakness in children with cerebral palsy. Developmental
Medicine and Child Neurology, 45 (8), p542-550.
Giangreco MF (1986). Effects of integrated therapy: a pilot
study. Journal for the Association of Persons with Severe
Handicaps. 11(3), p. 205-208.
Giangreco MF, Edelman S & Dennis R (1991). Common
Professional Practices That Interfere with the Integrated
delivery of Related Services. Remedial and Special
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Hanna SE, Bartlett DJ, Rivard LM, & Russell DJ (2008a).
Tabulated reference percentiles for the 66-item Gross
Motor Function Measure for use with children having
cerebral palsy. April 2008, available at www.canchild.ca
Hanna SE, Bartlet DJ, Rivard LM, Russell DJ (2008b).
Reference Curves for the Gross Motor Function Measure:
Percentiles for Clinical Description and Tracking over
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Barrett R.S & Lichtwark GI (2010). Gross muscle
morphology and structure in cerebral palsy: a systematic
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Harries N, Kassirer M, Amichal T, & Lahat E (2004).
Changes over years in Gross Motor Function of 3-8 year
old children with Cerebral Palsy: Using the Gross Motor
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SD, & Palisano RJ (2000). Improved scaling of the Gross
Motor Function Measure for Children with Cerebral
Palsy: Evidence of Reliability and Validity. Physical
Therapy, 80, p. 873-885.
Russell DJ, Rosenbaum PL, Avery LM, Lane M (2002).
Gross Motor Function Measure (GMFM-66 & GMFM-88)
User’s Manual. Mac Keith Press, London.
Shortland A (2009). Muscle deficits in cerebral palsy and
early loss of mobility: can we learn something from our
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(suppl 4.) p. 59-63.
Sorsdahl AB, Moe-Nilssen R, Kaal, HK, Rieber J, & Strand
LI (2010). Change in basic motor abilities, quality of
movement and everyday activities following intensive,
goal-directed, activity focussed physiotherapy in a group
setting for children with cerebral palsy. BMC Pediatrics,
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Srsen KG (2012). Evaluation measures for children with
cerebral palsy. Eastern Journal of Medicine, 17 (4), pp 156165.
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233-239.
69
Discussion
There is a growing body of knowledge of the long
term progression of motor skills in children with CP.
The GMFM and the reference curves are seen as the
‘gold standard’ of motor assessments for children
with CP due to their established validity and
reliability (Ko & Kim, 2012; Brunton & Bartlett, 2011;
Russell et al, 2000). A large quantity of data was
used to create the reference curves (657 children)
and they indicate an age-90 value of 3 years 6
months for GMFCS IV, a peak of ability between the
ages of 6-7 years, a plateau, followed by a reduction
in abilities (Hanna et al, 2008a; Hanna et al, 2008b;
Odman & Oberg, 2005; Harries et al, 2004;
Rosenbaum et al, 2002). The trend of scores after 6-7
years of age is a reduction across most percentiles,
suggesting that the score at 12 years 0 months is
likely to be an over-estimation of the actual
reference curve at 12 years 6 months.
If a lack of therapy had been significant in the preschool years then it would be expected that there
would be a steep rise in scores initially when
accessing an integrated approach with a subsequent
plateau effect. The effect observed is a constant
steady increase with a sharper rise following the
introduction of intermittent intensive
physiotherapy. Figure 2 shows that that the
trajectory of the case subject’s curve differs from the
reference curves that are an indication of the natural
progression usually observed for GMFCS IV. In the
GMFM-66 there is removal of many lower level
items therefore there is reduced potential for change
in GMFCS levels IV and V compared to the GMFM88.
The subject experienced low level continuous
activity (integrated therapy) and intermittent
intensive blocks. These two activity types together
offer a plethora of physiological benefits that can
address some of the issues affecting motor function
in children with CP. The physiological benefits of
intermittent intensive therapy are increased
resistance to fatigue, increased hypertrophy,
increased muscle power and increased recruitment
of higher threshold motor units. Low level
continuous activity offers the benefits of increasing
capillary density, number of mitochondria,
endurance, reducing muscle mass and converting
fast-slow twitch fibres (McArdle et al, 2000).
A child with CP faces a multitude of challenges
including reduced descending neural (excitatory)
drive, damage to inhibitory tracts, failure to recruit
high threshold motor units, fibre loss, type I muscle
fibre predominance, sarcopenia, muscle belly
shortening, chronic denervation of fast muscle
fibres, reduced selective control, cross innervation of
68
axons (co-contraction), altered biomechanical levers
(reduced efficiency), increased volume of connective
tissue, reduced muscle size (volume and length) and
reduced fibre length (Sorsdahl et al, 2010; Barrett &
Lichtwark, 2010; Shortland, 2009; Morton, et al,
2005; Blundell et al, 2003; Darrah et al, 2003; Elder et
al, 2003). The two approaches combined appear to
have contributed to a greater than average increase
in GMFM scores (Figure 2).
This evaluation shows that the integrated approach
in this case has led to a rate of motor skill
development beyond average expectation between
the ages of 3 and 12 years as compared with the
reference curves. The unique characteristics of this
case subject regarding the lack of medical
intervention create an atypical example of progress
and similar children will be sparse in the average
caseload. The extent of any effect in other children
will be dependent on the type of CP, dose of muscle
relaxants, frequency and type of surgery and
number of episodes of botox injections. This case
subject was selected having not experienced any of
these variables allowing for evaluation of the effect
of therapy. Despite the relative purity of the subject,
the principles of training and physiology on which
the training was based apply to any child with CP
and associated motor impairment.
Conclusion
Based on this case study it is suggested that an
integrated approach facilitates a longer period of
increasing skills than average (compared to the
reference curves). It is unclear whether this altered
curve trajectory will progress to a subsequent
increase in function, if the end point will be
unchanged at 18 years of age, or whether
integration merely slows the process of
plateau/decline.
Further analysis of a larger sample of GMFCS IV,
and across other GMFCS classifications will add
credibility and substance to the argument that an
integrated approach could maximise motor ability.
It will be of scientific interest to discover whether
this case subject will: return to the 3rd centile as an
adult (and the psychological impact of this); remain
on the 80th centile; or somewhere between the two.
There is little data on strength training in GMFCS
levels III, IV and V, therefore this adds to the
growing evidence base.
Blundell SW, Shepherd RB, Dean CM, & Adams RD
(2003). Functional strength training in cerebral palsy: a
pilot study of a group circuit training class for children
aged 4-8 years. Clinical Rehabilitation, 17, p. 48-57.
Brunton LK & Bartlett DJ (2011). Validity and Reliability of
Two Abbreviated Versions of the Gross Motor Function
Measure. Physical Therapy, 91, p577-588.
Function Measure (GMFM-88). Israeli Medical Association
Journal, 6, p.408-411.
Ko I, & Kim M (2012). Inter-rater reliability of the KGMFM-88 and GMPM for children with Cerebral Palsy.
Annals of Rehabilitation Medicine, 36, p. 233-239.
McArdle WD, McArdle FI, Katch VL (2000). Essentials of
Exercise Physiology. Lippincott, Willimas & Wilkins,
London, p.389-424.
Children’s Workforce Development Council (2008).
Integrated working. London
www.cwdcouncil.or.uk/integrated-working [accessed
30.8.12] www.ecm.gov.uk [accessed 30.8.12]
Morton J, Brownlee M, & McFadyen AK (2005). The
effects of progressive resistance training for children with
cerebral palsy, Clinical Rehabilitation, 19 (1), pp. 283-289.
Christiansen AS & Lange C (2008). Intermittent versus
continuous physiotherapy in children with cerebral palsy.
Developmental Medicine and Child Neurology, 50 (4), P. 290293.
Odman P, & Oberg B (2005). Effectiveness of intensive
training for children with cerebral palsy-a comparison
between child and youth rehabilitation and conductive
education. Journal of Rehabilitation Medicine, 37, p. 263-270.
Darrah J, Watkins B, Chen L, & Bonin C (2003). Effects of
Conductive Education Intervention for Children with a
Diagnosis of Cerebral Palsy: An AACPDM Evidence
Report. AACPDM Database of Evidence Reports. p1-34.
Palisano RJ (2006). A collaborative Model of Service
Delivery for Children with Movement Disorders: A
Framework for Evidence-Based Decision Making.
Physical Therapy, 86, p. 1295-1305.
Debuse D & Brace H (2011). Outcome measures of activity
for children with cerebral palsy: A systematic review,
Pediatric Physical Therapy, 23 (3), pp.221-231.
Rosenbaum PL, Walter SD, Hanna SE, Palisano RJ, Russell
DJ, Raina P, Wood E, Bartlett DJ, Galuppi BE (2009).
Prognosis for gross motor function in cerebral palsy, The
Journal of the American Medical Association, 288 (11), pp.
1357-1363.
Dodd KJ, Taylor NF, & Damiano DL (2002). A systematic
review of the effectiveness of strength-training programs
for people with cerebral palsy. Archives of Physical
Medicine and Rehabilitation, 83 (8), p. 1157-1164.
Elder GCB, Kirk J, Stewart G, Cook K, Weir D, Marshall A,
& Leahey L (2003). Contributing factors to muscle
weakness in children with cerebral palsy. Developmental
Medicine and Child Neurology, 45 (8), p542-550.
Giangreco MF (1986). Effects of integrated therapy: a pilot
study. Journal for the Association of Persons with Severe
Handicaps. 11(3), p. 205-208.
Giangreco MF, Edelman S & Dennis R (1991). Common
Professional Practices That Interfere with the Integrated
delivery of Related Services. Remedial and Special
Education, 12(2), p. 16-24.
Hanna SE, Bartlett DJ, Rivard LM, & Russell DJ (2008a).
Tabulated reference percentiles for the 66-item Gross
Motor Function Measure for use with children having
cerebral palsy. April 2008, available at www.canchild.ca
Hanna SE, Bartlet DJ, Rivard LM, Russell DJ (2008b).
Reference Curves for the Gross Motor Function Measure:
Percentiles for Clinical Description and Tracking over
Time Among Children with Cerebral Palsy. Physical
Therapy, 88(5), p. 597-607.
References
Hari M, & Akos K (1988). Conductive Education, Tavistock
Routledge, London. p. 138-158.
Barrett R.S & Lichtwark GI (2010). Gross muscle
morphology and structure in cerebral palsy: a systematic
review. Developmental Medicine and Child Neurology, 52 (9),
p794-804.
Harries N, Kassirer M, Amichal T, & Lahat E (2004).
Changes over years in Gross Motor Function of 3-8 year
old children with Cerebral Palsy: Using the Gross Motor
Rowland TW (2005). Children’s Exercise Physiology.
Human Kinetics, Leeds, p. 182-195.
Russell DJ, Avery LM, Rosenbaum PL, Raina PS, Walter
SD, & Palisano RJ (2000). Improved scaling of the Gross
Motor Function Measure for Children with Cerebral
Palsy: Evidence of Reliability and Validity. Physical
Therapy, 80, p. 873-885.
Russell DJ, Rosenbaum PL, Avery LM, Lane M (2002).
Gross Motor Function Measure (GMFM-66 & GMFM-88)
User’s Manual. Mac Keith Press, London.
Shortland A (2009). Muscle deficits in cerebral palsy and
early loss of mobility: can we learn something from our
elders? Developmental Medicine and Child Neurology, 51
(suppl 4.) p. 59-63.
Sorsdahl AB, Moe-Nilssen R, Kaal, HK, Rieber J, & Strand
LI (2010). Change in basic motor abilities, quality of
movement and everyday activities following intensive,
goal-directed, activity focussed physiotherapy in a group
setting for children with cerebral palsy. BMC Pediatrics,
10:26.
Srsen KG (2012). Evaluation measures for children with
cerebral palsy. Eastern Journal of Medicine, 17 (4), pp 156165.
Trahan J, & Malouin F (2002). Intermittent intensive
physiotherapy in children with cerebral palsy: a pilot
study. Developmental Medicine and Child Neurology, 44, pp.
233-239.
69
Penny Butler [*], Richard Major, Pauline Holbrook, Sarah Bew, Lynne Ford
The Movement Centre, Robert Jones and Agnes Hunt Hospital, Oswestry, SY10 7AG
*Corresponding author: email: pennybutler@the-movement-centre.co.uk
________________________________________________________________________________
Background
There is an increasing demand for evidence based
practice in physiotherapy. This demand comes from
clinicians who wish to optimise the management of
patients in their care and from purchasers such as
Clinical Commissioning Groups. When these
questions are directed at paediatric physiotherapists,
and specifically with respect to the treatment of
children with cerebral palsy (CP), there is a variety
of assessment tools that can be used to evaluate and
support a particular treatment approach. One of the
most common is the Gross Motor Function Measure
(GMFM), a standardised and validated measure that
is internationally recognised (Russell et al, 2002).
This evaluative tool provides information about a
child’s functional skills at a specific point in time
and will give some information about abilities
relative to other children with CP. Use of the Gross
Motor Function Classification System (GMFCS)
(Palisano et al, 2007) allows approximate prediction
of functional expectation for an individual child.
The creation of Motor Development Curves
(Rosenbaum et al, 2002) combined the GMFM and
GMFCS and enabled some evaluation of functional
skills relative to the average for a child’s age and
GMFCS Level. The development of reference
percentiles (Hanna et al, 2008a) provided normative
interpretation of GMFM-66 scores for the first time,
further increasing the utility of the GMFM as a
clinical tool. These were provided as graphical data
with tabulated percentiles available on-line (Hanna
et al, 2008b). Clinicians were thus able to make a
more accurate review of a child’s progress against
the average for children in the appropriate GMFCS
Level. The tables provide information at 0, 3, 6 and
9 months for each year from 2 years to 12 years 0
months with GMFM scores enabling identification
of every 5th percentile from 5th to 95th with the
addition of the 3rd and 97th percentile.
As well as providing information about individual
children, these tools offer the potential for
determining how interventions provided by an
individual physiotherapist or by a group of
physiotherapists compare with other
physiotherapists. However, they do not appear to
be used in this way. Research answers the question
70
of ‘is treatment-a better than treatment-b?’ but does
not inform clinicians about their own results
compared to any benchmark. The lack of
comparative data may be because the information is
currently limited to visual inspection of tables and
graphs and to data that is provided in the tables so
that only the value closest to the child’s or group of
children’s age and GMFM score can be used. It is
also difficult to be accurate in plotting a percentile
on a print out of the relevant graph.
This work was therefore to develop a system
extending the use of Reference Percentiles to
numerically calculate the percentile and to be able to
present the mean percentile change over a course of
therapy/intervention so that individual and group
results can be easily and accurately determined.
Method / Results
A two-way linear interpolation1 method of
calculating percentiles was developed, i.e. for age
and for GMFM score. This enabled every possible
combination of age and GMFM score thus
overcoming the limitation of specific age bands and
a limited number of GMFM scores. Software was
further developed so that the user had only to enter
the child’s GMFCS level, age and GMFM score on
an interface screen and the percentile was
automatically calculated. The software also allowed
two data entries so that age and GMFM scores could
be entered at the start and end of a specific time
period. This meant that percentiles could be
determined at yearly review or at start and end of a
specific course of physiotherapy. A further
development was a ‘Report Generator’ that plotted
the information onto the appropriate GMFCS level
percentile graph. This could then be printed and
filed in the child’s clinical notes. The development
of this method also meant that it is possible to enter
the mean GMFM score for a group of children
within the same GMFCS level. This could be done
over a specific time period, e.g. 12 months, using the
mean age of the children at the start and end of the
given period or to determine the average length of a
course of physiotherapy.
P. Butler et al. / APCP Journal Volume 5 Number 1 (2014) 70-71
Discussion / Conclusion
This work has built on the foundation provided by
CanChild and created the potential for percentile
change for a child or the mean percentile change for
a group of children to be easily compared with the
published ‘norm’. Caution must be used when
interpreting percentile comparisons since the
expected within-child variability in percentiles is
substantial. As well as giving a simple and
straightforward method for monitoring the progress
of children, this system could be used to compare
clinical outcomes in children with CP between
physiotherapists, between departments and
possibly even between countries.
References
Hanna, S.E., Bartlett, D.J., Rivard, L.M. and Russell, D.J.
2008b. Reference curves for the Gross Motor Function
Measure: percentiles for clinical description and tracking over
time among children with cerebral palsy. Physical
Therapy.88:596–607.
2008b. Tabulated reference percentiles for the GMFM-66 Gross
Motor Function Measure for use with children having cerebral
palsy. [online]. Available at www.canchild.ca [Accessed
June 2013]
Palisano, R., Rosenbaum, R., Bartlett, D. and Livingston,
M. 2007. Gross Motor Function Classification System
Expanded and Revised. [online]. Available at
www.canchild.ca [Accessed June 2013]
Rosenbaum, P.L., Walter, S.D., and Hanna, S.E. 2002.
Prognosis for gross motor function in cerebral palsy: creation of
motor development curves. Journal of the American Medical
Association.288:1357–1363.
Russell, D.J., Rosenbaum, P.L., Avery, L.M. and Lane, M.
2002. Gross Motor Function Measure (GMFM-66 & GMFM88) User’s Manual. London: Mac Keith Press.
______________________________________
1
A method of constructing new data points within the range of a
discrete set of known data points.
71
Penny Butler [*], Richard Major, Pauline Holbrook, Sarah Bew, Lynne Ford
The Movement Centre, Robert Jones and Agnes Hunt Hospital, Oswestry, SY10 7AG
*Corresponding author: email: pennybutler@the-movement-centre.co.uk
________________________________________________________________________________
Background
There is an increasing demand for evidence based
practice in physiotherapy. This demand comes from
clinicians who wish to optimise the management of
patients in their care and from purchasers such as
Clinical Commissioning Groups. When these
questions are directed at paediatric physiotherapists,
and specifically with respect to the treatment of
children with cerebral palsy (CP), there is a variety
of assessment tools that can be used to evaluate and
support a particular treatment approach. One of the
most common is the Gross Motor Function Measure
(GMFM), a standardised and validated measure that
is internationally recognised (Russell et al, 2002).
This evaluative tool provides information about a
child’s functional skills at a specific point in time
and will give some information about abilities
relative to other children with CP. Use of the Gross
Motor Function Classification System (GMFCS)
(Palisano et al, 2007) allows approximate prediction
of functional expectation for an individual child.
The creation of Motor Development Curves
(Rosenbaum et al, 2002) combined the GMFM and
GMFCS and enabled some evaluation of functional
skills relative to the average for a child’s age and
GMFCS Level. The development of reference
percentiles (Hanna et al, 2008a) provided normative
interpretation of GMFM-66 scores for the first time,
further increasing the utility of the GMFM as a
clinical tool. These were provided as graphical data
with tabulated percentiles available on-line (Hanna
et al, 2008b). Clinicians were thus able to make a
more accurate review of a child’s progress against
the average for children in the appropriate GMFCS
Level. The tables provide information at 0, 3, 6 and
9 months for each year from 2 years to 12 years 0
months with GMFM scores enabling identification
of every 5th percentile from 5th to 95th with the
addition of the 3rd and 97th percentile.
As well as providing information about individual
children, these tools offer the potential for
determining how interventions provided by an
individual physiotherapist or by a group of
physiotherapists compare with other
physiotherapists. However, they do not appear to
be used in this way. Research answers the question
70
of ‘is treatment-a better than treatment-b?’ but does
not inform clinicians about their own results
compared to any benchmark. The lack of
comparative data may be because the information is
currently limited to visual inspection of tables and
graphs and to data that is provided in the tables so
that only the value closest to the child’s or group of
children’s age and GMFM score can be used. It is
also difficult to be accurate in plotting a percentile
on a print out of the relevant graph.
This work was therefore to develop a system
extending the use of Reference Percentiles to
numerically calculate the percentile and to be able to
present the mean percentile change over a course of
therapy/intervention so that individual and group
results can be easily and accurately determined.
Method / Results
A two-way linear interpolation1 method of
calculating percentiles was developed, i.e. for age
and for GMFM score. This enabled every possible
combination of age and GMFM score thus
overcoming the limitation of specific age bands and
a limited number of GMFM scores. Software was
further developed so that the user had only to enter
the child’s GMFCS level, age and GMFM score on
an interface screen and the percentile was
automatically calculated. The software also allowed
two data entries so that age and GMFM scores could
be entered at the start and end of a specific time
period. This meant that percentiles could be
determined at yearly review or at start and end of a
specific course of physiotherapy. A further
development was a ‘Report Generator’ that plotted
the information onto the appropriate GMFCS level
percentile graph. This could then be printed and
filed in the child’s clinical notes. The development
of this method also meant that it is possible to enter
the mean GMFM score for a group of children
within the same GMFCS level. This could be done
over a specific time period, e.g. 12 months, using the
mean age of the children at the start and end of the
given period or to determine the average length of a
course of physiotherapy.
P. Butler et al. / APCP Journal Volume 5 Number 1 (2014) 70-71
Discussion / Conclusion
This work has built on the foundation provided by
CanChild and created the potential for percentile
change for a child or the mean percentile change for
a group of children to be easily compared with the
published ‘norm’. Caution must be used when
interpreting percentile comparisons since the
expected within-child variability in percentiles is
substantial. As well as giving a simple and
straightforward method for monitoring the progress
of children, this system could be used to compare
clinical outcomes in children with CP between
physiotherapists, between departments and
possibly even between countries.
References
2008b. Reference curves for the Gross Motor Function
Measure: percentiles for clinical description and tracking over
time among children with cerebral palsy. Physical
Therapy.88:596–607.
2008b. Tabulated reference percentiles for the GMFM-66 Gross
Motor Function Measure for use with children having cerebral
palsy. [online]. Available at www.canchild.ca [Accessed
June 2013]
Palisano, R., Rosenbaum, R., Bartlett, D. and Livingston,
M. 2007. Gross Motor Function Classification System
Expanded and Revised. [online]. Available at
www.canchild.ca [Accessed June 2013]
Rosenbaum, P.L., Walter, S.D., and Hanna, S.E. 2002.
Prognosis for gross motor function in cerebral palsy: creation of
motor development curves. Journal of the American Medical
Association.288:1357–1363.
Russell, D.J., Rosenbaum, P.L., Avery, L.M. and Lane, M.
2002. Gross Motor Function Measure (GMFM-66 & GMFM88) User’s Manual. London: Mac Keith Press.
______________________________________
1
A method of constructing new data points within the range of a
discrete set of known data points.
71
Book Reviews / APCP Journal Volume 5 Number 1 (2014) 72
Book Reviews / APCP Journal Volume 5 Number 1 (2014) 73-74
Life Quality Outcomes in Children and Young People with Neurological and
Developmental Conditions
Richard Baker
Edited by Gabriel M Ronen and Peter L Rosenbaum
A practical guide from Mac Keith Press (2013) ISBN 978-1-908316-66-0
Mac Keith Press 2013 ISBN 978-1-908316-58-5
Reviewed by Christina Calderon
________________________________________________________________________________
How can we tell if our patients are better after our
interventions? What do we mean by better, and
who is judging?
The authors of this book aim to discuss the language
and theories surrounding quality of life and its
potential outcome measures, and offer ideas and
tools to evaluate practice and suggest answers to
questions such as those above. They provide a
critical review of the available information on life
quality outcomes, concepts and methodology
through discussion of the complex life issues of
children and young people with chronic conditions.
Their approach is non-categorical in that they discuss
medical impairments in terms of their impact on the
patient’s aspirations, values and welfare, rather than
condition-specific impairments. This is due to the
rising awareness that social factors are as important
as the biomedical condition itself, and that a
patient/parent may take a very different view of
progress, disability, health status and quality of life
from that of a healthcare professional. The authors
suggest that these Patient Reported Outcome
Measures should be considered when planning and
evaluating evidence-based health interventions.
This book is available in hardback and has 375
pages. It has 27 chapters that are arranged in three
sections, with an introduction and afterword by the
editors. Each chapter begins with an overview of
the subject area and finishes with a conclusion or
summary, followed by extensive references and
suggestions for further reading. Many chapters
include case studies or examples of good practice.
Section A introduces the concepts involved in life
quality assessment. There is discussion regarding
the definitions of the international and
interprofessional language of the World Health
Organisation’s International Classification of
Functioning, Disability and Health 2001 (ICF). Key
themes are ‘participation’, ‘functioning’, ‘health’ and
‘quality of life’. Further subsections cover the
psychological impact on the child of living with a
neurodevelopmental condition, development of
relationships, stigma, and the importance of family
and resilience as a characteristic. This section has a
lot of general information, which would be of
72
interest to anyone working in a healthcare setting.
Section B covers the specifics of research questions
and methodology, and measurement tool selection.
It would mainly be useful to those considering
undertaking some research, including clinicians
seeking to evaluate their service. There are some
good examples of measurement tools of various
types, along with justifications for use and their
limitations. This is a fairly complex section, which
finishes with some thought-provoking ethical
dilemmas.
In section C, the main themes are application of the
theory, knowledge translation and, using the
evidence to bring about changes in practice.
Clinicians, researchers and policy makers are
encouraged to consider how they can have a
positive effect on life quality outcomes. The benefits
of interprofessional education and working are
discussed, as well as special education and
transition to adulthood. The final subsection covers
the social aspects of disability, parent organisations,
and the role of policy debates and court cases in
improving the lives of children with neurodisability.
The editors and contributors come from a variety of
clinical, academic and international backgrounds,
although the majority of the case studies and legal
cases are North American. The clinical background
of the editors is in epilepsy management, but
throughout the book parallels are drawn with
neurological and developmental conditions
generally, and with cerebral palsy and spina bifida
more specifically.
This would be a good interprofessional reference
book for a child development centre, or for someone
starting out on a research project into quality of life.
It draws together a huge amount of literature and
research, from what is a relatively new subject area,
and poses some interesting questions for further
investigation.
Reviewed by Jennifer McCahill
________________________________________________________________________________
This comprehensive guide is described by the
author as a ‘handbook’ for clinicians, students and
researchers who are working in an instrumented (3dimensional) gait laboratory. Professor Baker is
internationally recognised in clinical gait analysis
and this book is a compilation of his experience and
knowledge, as well as the evidence-base available to
inspire good practice in the gait analysis
community.
This is a paperback book, which has fifteen chapters
and two appendices in 221 pages. In addition, it
contains information about the author,
acknowledgements of others who have contributed,
a foreword by Professor Kerr Graham, a preface and
a terminology section. The book is very clearly
written despite containing a lot of technical
information on the specifics of achieving good
quality gait analysis data. The book is not intended
for professionals working outside of a gait analysis
service unless the reader is interested in improving
their understanding of clinical gait analysis reports
and/or data.
Chapter 1 provides a good introduction of the
history and evolution of clinical gait analysis. Here
the author makes specific mention of differentiating
between assessment (the data) and clinical decisionmaking (what to do based on the data). Professor
Baker then describes his ideal professional to work
in a laboratory as a gait analyst – who would have
expert training in both the clinical examination and
the biomechanics/ physics and mathematics
required for clinical gait analysis. As this combined
training does not currently exist, the two roles
common to clinical gait analysis remains
physiotherapists and engineers (clinical scientists).
Chapter 2 provides a good summary of basic
measurements including spatial parameters, phases
of the gait cycle, kinematics and kinetics. Chapter 3
describes the conventional gait model that most
centres worldwide use due to it having the most
formal validation in the published literature.
Marker placement is well described here including
some possible variations. Chapter 4 outlines
alternatives to the conventional gait model
including foot models and upper body (trunk)
models. Chapter 5 describes advanced kinematic
and kinetic processing techniques that are not
currently used in routine gait analysis, but have
generated a lot of research interest. EMG is clearly
described in Chapter 6 including how the signal is
produced, equipment available, signal processing,
and quality assurance measures including sensor
placement. It is noted by the authors that despite
EMG being widely used from the 1960s to the 1980s,
kinematic data is now considered the primary
information in clinical gait analysis with EMG and
kinematic data as secondary information.
Chapters 7, 8 and 9 are probably the most useful for
physiotherapists working outside of a formal gait
laboratory setting. Chapter 7 describes how to take
useful clinical video with and without the use of
other equipment. Chapter 8 details the importance
of the standardised clinical examination used in
clinical gait analysis. Chapter 9 discusses general
measures of walking ability including classification
systems (GMFCS, ICF), physiological measures
(timed up & go, gait indices, energy cost), and
functional measures (functional assessment
questionnaire, functional mobility scale,
pedometers). The authors describe the important
difference between statistically significant change
when looking at results.
Chapter 10 describes the relationships between all of
the different types of data previously described
including clinical examination, video, kinematics,
and EMG. This requires expert understanding of
clinical gait analysis in order to provide accurate
and objective interpretation. Chapter 12 discusses
impairment focused interpretation that is one technique
of reporting on the gait analysis data. The authors
also emphasise that if a gait analysis report contains
treatment recommendations, these recommendations
should come from the appropriate professional, i.e. a
surgeon to recommend surgery, a physiotherapist to
recommend physiotherapy, an orthotist to
recommend orthotics.
73
Book Reviews / APCP Journal Volume 5 Number 1 (2014) 72
Life Quality Outcomes in Children and Young People with Neurological and
Developmental Conditions
Richard Baker
Edited by Gabriel M Ronen and Peter L Rosenbaum
A practical guide from Mac Keith Press (2013) ISBN 978-1-908316-66-0
Mac Keith Press 2013 ISBN 978-1-908316-58-5
Reviewed by Christina Calderon
________________________________________________________________________________
How can we tell if our patients are better after our
interventions? What do we mean by better, and
who is judging?
The authors of this book aim to discuss the language
and theories surrounding quality of life and its
potential outcome measures, and offer ideas and
tools to evaluate practice and suggest answers to
questions such as those above. They provide a
critical review of the available information on life
quality outcomes, concepts and methodology
through discussion of the complex life issues of
children and young people with chronic conditions.
Their approach is non-categorical in that they discuss
medical impairments in terms of their impact on the
patient’s aspirations, values and welfare, rather than
condition-specific impairments. This is due to the
rising awareness that social factors are as important
as the biomedical condition itself, and that a
patient/parent may take a very different view of
progress, disability, health status and quality of life
from that of a healthcare professional. The authors
suggest that these Patient Reported Outcome
Measures should be considered when planning and
evaluating evidence-based health interventions.
This book is available in hardback and has 375
pages. It has 27 chapters that are arranged in three
sections, with an introduction and afterword by the
editors. Each chapter begins with an overview of
the subject area and finishes with a conclusion or
summary, followed by extensive references and
suggestions for further reading. Many chapters
include case studies or examples of good practice.
Section A introduces the concepts involved in life
quality assessment. There is discussion regarding
the definitions of the international and
interprofessional language of the World Health
Organisation’s International Classification of
Functioning, Disability and Health 2001 (ICF). Key
themes are ‘participation’, ‘functioning’, ‘health’ and
‘quality of life’. Further subsections cover the
psychological impact on the child of living with a
neurodevelopmental condition, development of
relationships, stigma, and the importance of family
and resilience as a characteristic. This section has a
lot of general information, which would be of
72
interest to anyone working in a healthcare setting.
Section B covers the specifics of research questions
and methodology, and measurement tool selection.
It would mainly be useful to those considering
undertaking some research, including clinicians
seeking to evaluate their service. There are some
good examples of measurement tools of various
types, along with justifications for use and their
limitations. This is a fairly complex section, which
finishes with some thought-provoking ethical
dilemmas.
In section C, the main themes are application of the
theory, knowledge translation and, using the
evidence to bring about changes in practice.
Clinicians, researchers and policy makers are
encouraged to consider how they can have a
positive effect on life quality outcomes. The benefits
of interprofessional education and working are
discussed, as well as special education and
transition to adulthood. The final subsection covers
the social aspects of disability, parent organisations,
and the role of policy debates and court cases in
improving the lives of children with neurodisability.
The editors and contributors come from a variety of
clinical, academic and international backgrounds,
although the majority of the case studies and legal
cases are North American. The clinical background
of the editors is in epilepsy management, but
throughout the book parallels are drawn with
neurological and developmental conditions
generally, and with cerebral palsy and spina bifida
more specifically.
This would be a good interprofessional reference
book for a child development centre, or for someone
starting out on a research project into quality of life.
It draws together a huge amount of literature and
research, from what is a relatively new subject area,
and poses some interesting questions for further
investigation.
Reviewed by Jennifer McCahill
________________________________________________________________________________
This comprehensive guide is described by the
author as a ‘handbook’ for clinicians, students and
researchers who are working in an instrumented (3dimensional) gait laboratory. Professor Baker is
internationally recognised in clinical gait analysis
and this book is a compilation of his experience and
knowledge, as well as the evidence-base available to
inspire good practice in the gait analysis
community.
This is a paperback book, which has fifteen chapters
and two appendices in 221 pages. In addition, it
contains information about the author,
acknowledgements of others who have contributed,
a foreword by Professor Kerr Graham, a preface and
a terminology section. The book is very clearly
written despite containing a lot of technical
information on the specifics of achieving good
quality gait analysis data. The book is not intended
for professionals working outside of a gait analysis
service unless the reader is interested in improving
their understanding of clinical gait analysis reports
and/or data.
Chapter 1 provides a good introduction of the
history and evolution of clinical gait analysis. Here
the author makes specific mention of differentiating
between assessment (the data) and clinical decisionmaking (what to do based on the data). Professor
Baker then describes his ideal professional to work
in a laboratory as a gait analyst – who would have
expert training in both the clinical examination and
the biomechanics/ physics and mathematics
required for clinical gait analysis. As this combined
training does not currently exist, the two roles
common to clinical gait analysis remains
physiotherapists and engineers (clinical scientists).
Chapter 2 provides a good summary of basic
measurements including spatial parameters, phases
of the gait cycle, kinematics and kinetics. Chapter 3
describes the conventional gait model that most
centres worldwide use due to it having the most
formal validation in the published literature.
Marker placement is well described here including
some possible variations. Chapter 4 outlines
alternatives to the conventional gait model
including foot models and upper body (trunk)
models. Chapter 5 describes advanced kinematic
and kinetic processing techniques that are not
currently used in routine gait analysis, but have
generated a lot of research interest. EMG is clearly
described in Chapter 6 including how the signal is
produced, equipment available, signal processing,
and quality assurance measures including sensor
placement. It is noted by the authors that despite
EMG being widely used from the 1960s to the 1980s,
kinematic data is now considered the primary
information in clinical gait analysis with EMG and
kinematic data as secondary information.
Chapters 7, 8 and 9 are probably the most useful for
physiotherapists working outside of a formal gait
laboratory setting. Chapter 7 describes how to take
useful clinical video with and without the use of
other equipment. Chapter 8 details the importance
of the standardised clinical examination used in
clinical gait analysis. Chapter 9 discusses general
measures of walking ability including classification
systems (GMFCS, ICF), physiological measures
(timed up & go, gait indices, energy cost), and
functional measures (functional assessment
questionnaire, functional mobility scale,
pedometers). The authors describe the important
difference between statistically significant change
when looking at results.
Chapter 10 describes the relationships between all of
the different types of data previously described
including clinical examination, video, kinematics,
and EMG. This requires expert understanding of
clinical gait analysis in order to provide accurate
and objective interpretation. Chapter 12 discusses
impairment focused interpretation that is one technique
of reporting on the gait analysis data. The authors
also emphasise that if a gait analysis report contains
treatment recommendations, these recommendations
should come from the appropriate professional, i.e. a
surgeon to recommend surgery, a physiotherapist to
recommend physiotherapy, an orthotist to
recommend orthotics.
73
Chapter 11 (quality assurance) and Chapter 13
(accuracy and measurement variability) are helpful
for clinical governance of a clinical gait analysis
service. Chapter 11 highlights the importance of
understanding the effects of altered marker
placement on kinematic data as well as recognising
errors in force plate measurements on kinetic data.
Chapter 13 provides techniques available to assess
the validity of gait data and includes a repeatability
study design.
Chapters 14 and 15 describe how to set up a clinical
gait service and how to set up and maintain a gait
analysis laboratory.
Overall this book is thoughtful and reader-friendly
with clear use of illustrations. It would be a useful
addition to any gait analysis service from new
laboratories to long-established services.
Rare Diseases / APCP Journal Volume 5 Number 1 (2014) 75-76
Descriptions of Rare Diseases Relevant to Paediatric Physiotherapy
A disease or disorder is defined as rare in Europe if it affects less than 1 in 2,000. One rare disease may affect
only a handful of patients in the EU, and another touch as many as 245,000. There are between 6,000 and
8,000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens. Eighty
percent of rare diseases are of genetic origin, and are often chronic and life-threatening.
European Alliance for Rare Diseases
www.eurordis.org
It is estimated that up to 4 million children and adults are affected by rare disorders in the UK according to
Contact a Family
www.cafamily.org.uk
________________________________________________________________________________________________
CLOVES Syndrome
CLOVES stands for Congenital Lipomatous
Overgrowth, Vascular malformations, Epidermal
nevi and Spinal / Skeletal anomalies and/or
Scoliosis. CLOVE syndrome was first described by
Sapp et al (2007).
In their study, Sapp et al (2007) seven case reviews
were conducted on patients that had a diagnosis of
Proteus syndrome, a disorder that entails localised,
progressive, bony distortion (Biesecker, 2006).
Following their review of the seven cases, Sapp et al
(2007) found that there was no bony overgrowth
present within the seven cases, therefore a new
diagnosis of CLOVE syndrome was established.
The lipomatous masses that are characteristic of
CLOVES syndrome behave like tumours and
therefore enlarge and reoccur after resection. The
lack of bony overgrowth found in CLOVES
syndrome as well as the masses re-occurring
distinguishes the two conditions (Alomari, 2008). It
has also been found that children with CLOVES
syndrome tend to have spinal involvement,
something that is not found in Proteus syndrome.
Incidence
CLOVES syndrome is a rare disease, approximately
only 90 children have been diagnosed worldwide
with this condition. Recent findings from Boston
Children’s Hospital have identified a genetic cause
for the condition, which is now pioneering new
research into the disease
( http://www.novanews.org/information/clovessyndrome/gene-for-cloves-identified ).
Physiotherapy management
CLOVES syndrome presentation can be varied,
however it is a progressive, life limiting disease and
therefore physiotherapy should aim to promote a
holistic approach to the child’s care incorporating
the whole multi-disciplinary team. Physiotherapy
should be integral into this care. The main aims of
physiotherapy are:
74
•
•
•
•
monitor respiratory function;
monitor joint ROM and muscle length;
provide 24 hour postural management;
pain management.
Specific considerations for these children include:
Skin Care
A soft fatty mass of variable sizes are seen in these
children, and can vary in positioning. These can be
subject to pressure sores. Specialised seating,
bedding, buggies and even moulded bespoke
inserts for seating may need to be considered to
increase comfort and prevent skin deterioration. If
the child has prescribed orthotics these need regular
monitoring, as CLOVES syndrome can particularly
affect the feet, which can lead to skin integrity
problems. A child with CLOVES syndrome may
require different types of shoes for orthosis for each
foot due to variations in size.
Respiriatory Care
Congenital lipomatous could occlude airways
therefore the child may require regular chest
physiotherapy including the use of CPAP over
night. Children with large facial masses may be
unable to clear their own secretions.
Lower Limb Abnormlities
Children with CLOVES syndrome have been shown
to have an abnormal patella as well as lower limb
joint abnormality this should be considered when
assessing their lower limb function, range and tone.
Some studies have noted spina bifida occulta as also
being present (Ahmed and Alomari, 2008; Sapp et
al. 2007).
Scoliosis
Scoliosis is commonly seen in these children and
again should be considered in any physiotherapy
base line assessment.
Summary
CLOVES is an extremely rare disease with new
research being dedicated to this condition.
75
Chapter 11 (quality assurance) and Chapter 13
(accuracy and measurement variability) are helpful
for clinical governance of a clinical gait analysis
service. Chapter 11 highlights the importance of
understanding the effects of altered marker
placement on kinematic data as well as recognising
errors in force plate measurements on kinetic data.
Chapter 13 provides techniques available to assess
the validity of gait data and includes a repeatability
study design.
Chapters 14 and 15 describe how to set up a clinical
gait service and how to set up and maintain a gait
analysis laboratory.
Overall this book is thoughtful and reader-friendly
with clear use of illustrations. It would be a useful
addition to any gait analysis service from new
laboratories to long-established services.
Descriptions of Rare Diseases Relevant to Paediatric Physiotherapy
A disease or disorder is defined as rare in Europe if it affects less than 1 in 2,000. One rare disease may affect
only a handful of patients in the EU, and another touch as many as 245,000. There are between 6,000 and
8,000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens. Eighty
percent of rare diseases are of genetic origin, and are often chronic and life-threatening.
European Alliance for Rare Diseases
www.eurordis.org
It is estimated that up to 4 million children and adults are affected by rare disorders in the UK according to
Contact a Family
www.cafamily.org.uk
________________________________________________________________________________________________
CLOVES Syndrome
CLOVES stands for Congenital Lipomatous
Overgrowth, Vascular malformations, Epidermal
nevi and Spinal / Skeletal anomalies and/or
Scoliosis. CLOVE syndrome was first described by
Sapp et al (2007).
In their study, Sapp et al (2007) seven case reviews
were conducted on patients that had a diagnosis of
Proteus syndrome, a disorder that entails localised,
progressive, bony distortion (Biesecker, 2006).
Following their review of the seven cases, Sapp et al
(2007) found that there was no bony overgrowth
present within the seven cases, therefore a new
diagnosis of CLOVE syndrome was established.
The lipomatous masses that are characteristic of
CLOVES syndrome behave like tumours and
therefore enlarge and reoccur after resection. The
lack of bony overgrowth found in CLOVES
syndrome as well as the masses re-occurring
distinguishes the two conditions (Alomari, 2008). It
has also been found that children with CLOVES
syndrome tend to have spinal involvement,
something that is not found in Proteus syndrome.
Incidence
CLOVES syndrome is a rare disease, approximately
only 90 children have been diagnosed worldwide
with this condition. Recent findings from Boston
Children’s Hospital have identified a genetic cause
for the condition, which is now pioneering new
research into the disease
( http://www.novanews.org/information/clovessyndrome/gene-for-cloves-identified ).
Physiotherapy management
CLOVES syndrome presentation can be varied,
however it is a progressive, life limiting disease and
therefore physiotherapy should aim to promote a
holistic approach to the child’s care incorporating
the whole multi-disciplinary team. Physiotherapy
should be integral into this care. The main aims of
physiotherapy are:
74
•
•
•
•
monitor respiratory function;
monitor joint ROM and muscle length;
provide 24 hour postural management;
pain management.
Specific considerations for these children include:
Skin Care
A soft fatty mass of variable sizes are seen in these
children, and can vary in positioning. These can be
subject to pressure sores. Specialised seating,
bedding, buggies and even moulded bespoke
inserts for seating may need to be considered to
increase comfort and prevent skin deterioration. If
the child has prescribed orthotics these need regular
monitoring, as CLOVES syndrome can particularly
affect the feet, which can lead to skin integrity
problems. A child with CLOVES syndrome may
require different types of shoes for orthosis for each
foot due to variations in size.
Respiriatory Care
Congenital lipomatous could occlude airways
therefore the child may require regular chest
physiotherapy including the use of CPAP over
night. Children with large facial masses may be
unable to clear their own secretions.
Lower Limb Abnormlities
Children with CLOVES syndrome have been shown
to have an abnormal patella as well as lower limb
joint abnormality this should be considered when
assessing their lower limb function, range and tone.
Some studies have noted spina bifida occulta as also
being present (Ahmed and Alomari, 2008; Sapp et
al. 2007).
Scoliosis
Scoliosis is commonly seen in these children and
again should be considered in any physiotherapy
base line assessment.
Summary
CLOVES is an extremely rare disease with new
research being dedicated to this condition.
75
Physiotherapy should adopt a holistic approach.
Physiotherapists working with children with
CLOVES syndrome should be aware of the common
problems that these children may face.
References
Alomari, AL (2008) Characteristics of a Distinct
Overgrowth Distinct Syndrome Clinical Dysmorphology
genetics 14(11) 1151 – 1157.
Sapp J C, Turner J T, Van de Kamp JM, Van Dijk F S,
Lowry RB (2007) Newly Delineated Syndrome of
Congenital Lipomatous Overgrowth, Vascular
Malformations, and Epidermal Nevi (CLOVE syndrome)
in Seven Patients. American Journal of Medical Genetics.
15;143A(24):2944-58.
Further reading:
Alomari A L (2011) Comments on the Diagnosis and
Management of Cloves Syndrome, Mar-Apr, 28(2):215-216
Alomari (2009) Characterization of a Distinct Syndrome
that Associates Complex Truncal Overgrowth, Vascular,
and Acral Anomalies: a Descriptive study of 18 cases of
CLOVES Syndrome Clinical Dysmorphology Jan;18(1):1-7
Biesecker, L. (2006) The Challenges of Proteus Syndrome:
Diagnosis and Management European Journal of Human
(http://www.novanews.org/information/clovessyndrome/gene-for-cloves-identified).
Cochrane Reviews / APCP Journal Volume 5 Number 1 (2014) 77-78
Summary of Cochrane Reviews
Sue Coombe – Jenny Lind Physiotherapy Department, Norfolk and Norwich University Hospitals NHS Foundation
Trust
Correspondence: email: sue.coombe@nnuh.nhs.uk
________________________________________________________________________________
Authors: Cox NS, Alison JA, Holland AE
________________________________________________________________________________
Information also obtained from:
Division of Vascular and International Radiology,
Department of Radiology, Children’s Hospital Boston and
Harvard Medical School, Boston, USA
Amy Jones
St Oswald’s Hospice, Newcastle-upon-Tyne
In this review, published in December 2013, the
authors evaluate the effect of treatment on
increasing participation in physical activity by
people with cystic fibrosis (CF).
Finally, the authors point to the need for further
research to establish the most effective intervention,
and the ideal duration, to improve participation in
physical activity for people with CF.
The review was undertaken because participation in
physical activity by people with CF, in common
with the general population, is largely agreed to be
beneficial. Health care professionals use a variety of
interventions to improve levels of participation in
physical activity for people with CF, as by
improving physical activity levels, health benefits
including improved prognostic outcomes may
result. The effectiveness of these interventions is
unclear, and has not previously been reviewed for
people with CF.
Main reference:
Cox NS, Alison JA, Holland AE. Interventions for
promoting physical activity in people with cystic fibrosis.
Cochrane Database of Systematic Reviews 2013, Issue 12. Art.
No.: CD009448. DOI: 10.1002/14651858.CD009448.pub2.
This review was intended to cover both adults and
children, although the studies that were included
were largely conducted with children.
Klijn PH, Oudshoorn A, van der Ent CK, van der Net J,
Kimpen JL, Helders PJ. Effects of anaerobic training in
children with cystic fibrosis: a randomized controlled
study. Chest 2004;125(4):1299–305. [CRS–ID:
5500100000002558]
The method used to conduct the review is
thoroughly covered, and the risk of bias is
discussed. From 567 citations, the reviewers
identified 14 studies, of which only 4 studies met
the criteria for inclusion.
These studies covered a total of 199 participants
with CF, inpatients and outpatients, with mean ages
ranging from 13.5 years to 19.5 years. All four of the
studies used exercise programmes to promote
physical activity. It was not possible to pool the
results across the four studies, due to variations in
the data collected, and in the lengths of the studies,
with intervention periods varying from eighteen
days to three years, and follow up periods from one
month to three years. The authors therefore found it
difficult to draw strong conclusions about which
were the most effective strategies, but concluded
that there was some limited evidence from these
studies that longer term (at least six months) self
directed exercise training programmes have a
greater effect on participation in physical activity
than short term supervised programmes.
Improvements were only seen when follow up
periods were longer than twelve months.
76
References for included studies:
Hebestreit H, Kieser S, Junge S, Ballmann M, Hebestreit
A,Schindler C, et al.Long-term effects of a partially
supervised conditioning programme in cystic fibrosis.
European Respiratory Journal 2010;35(3):578–83.
Reisman JJ, Schneiderman-Walker J, Corey M, Wilkes
D,Pedder L, Levison H, et al.The role of an organized
exercise program in cystic fibrosis - a three year study
[abstract].
Pediatric Pulmonology 1995;Suppl 12:261. [CRS–ID:
5500100000001555]
Schneiderman-Walker J, Pollock SL, Corey M, Wilkes DD,
Canny GJ, Pedder L, et al.A randomized controlled trial of
a 3-year home exercise program in cystic fibrosis. Journal
of Pediatrics 2000;136(3):304–10.
Selvadurai HC, Blimkie CJ, Meyers N, Mellis CM,Cooper
PJ, Van Asperen PP. Randomized controlled study of inhospital exercise training programs in children with cystic
fibrosis. Pediatric Pulmonology 2002;33(3):194–200.
elvadurai HC, Van Asperen PP, Cooper PJ, Mellis CM,
Blimkie CJ. A randomised controlled study of in-hospital
exercise training programs in children with cystic fibrosis
(CF) [abstract]. Pediatric Pulmonology 1999;Suppl 19:287–8
77
Physiotherapy should adopt a holistic approach.
Physiotherapists working with children with
CLOVES syndrome should be aware of the common
problems that these children may face.
References
Alomari, AL (2008) Characteristics of a Distinct
Overgrowth Distinct Syndrome Clinical Dysmorphology
genetics 14(11) 1151 – 1157.
Sapp J C, Turner J T, Van de Kamp JM, Van Dijk F S,
Lowry RB (2007) Newly Delineated Syndrome of
Congenital Lipomatous Overgrowth, Vascular
Malformations, and Epidermal Nevi (CLOVE syndrome)
in Seven Patients. American Journal of Medical Genetics.
15;143A(24):2944-58.
Further reading:
Alomari A L (2011) Comments on the Diagnosis and
Management of Cloves Syndrome, Mar-Apr, 28(2):215-216
Alomari (2009) Characterization of a Distinct Syndrome
that Associates Complex Truncal Overgrowth, Vascular,
and Acral Anomalies: a Descriptive study of 18 cases of
CLOVES Syndrome Clinical Dysmorphology Jan;18(1):1-7
Biesecker, L. (2006) The Challenges of Proteus Syndrome:
Diagnosis and Management European Journal of Human
(http://www.novanews.org/information/clovessyndrome/gene-for-cloves-identified).
Summary of Cochrane Reviews
Sue Coombe – Jenny Lind Physiotherapy Department, Norfolk and Norwich University Hospitals NHS Foundation
Trust
Correspondence: email: sue.coombe@nnuh.nhs.uk
________________________________________________________________________________
Authors: Cox NS, Alison JA, Holland AE
________________________________________________________________________________
Information also obtained from:
Division of Vascular and International Radiology,
Department of Radiology, Children’s Hospital Boston and
Harvard Medical School, Boston, USA
Amy Jones
St Oswald’s Hospice, Newcastle-upon-Tyne
In this review, published in December 2013, the
authors evaluate the effect of treatment on
increasing participation in physical activity by
people with cystic fibrosis (CF).
Finally, the authors point to the need for further
research to establish the most effective intervention,
and the ideal duration, to improve participation in
physical activity for people with CF.
The review was undertaken because participation in
physical activity by people with CF, in common
with the general population, is largely agreed to be
beneficial. Health care professionals use a variety of
interventions to improve levels of participation in
physical activity for people with CF, as by
improving physical activity levels, health benefits
including improved prognostic outcomes may
result. The effectiveness of these interventions is
unclear, and has not previously been reviewed for
people with CF.
Main reference:
Cox NS, Alison JA, Holland AE. Interventions for
promoting physical activity in people with cystic fibrosis.
Cochrane Database of Systematic Reviews 2013, Issue 12. Art.
No.: CD009448. DOI: 10.1002/14651858.CD009448.pub2.
This review was intended to cover both adults and
children, although the studies that were included
were largely conducted with children.
Klijn PH, Oudshoorn A, van der Ent CK, van der Net J,
Kimpen JL, Helders PJ. Effects of anaerobic training in
children with cystic fibrosis: a randomized controlled
study. Chest 2004;125(4):1299–305. [CRS–ID:
5500100000002558]
The method used to conduct the review is
thoroughly covered, and the risk of bias is
discussed. From 567 citations, the reviewers
identified 14 studies, of which only 4 studies met
the criteria for inclusion.
These studies covered a total of 199 participants
with CF, inpatients and outpatients, with mean ages
ranging from 13.5 years to 19.5 years. All four of the
studies used exercise programmes to promote
physical activity. It was not possible to pool the
results across the four studies, due to variations in
the data collected, and in the lengths of the studies,
with intervention periods varying from eighteen
days to three years, and follow up periods from one
month to three years. The authors therefore found it
difficult to draw strong conclusions about which
were the most effective strategies, but concluded
that there was some limited evidence from these
studies that longer term (at least six months) self
directed exercise training programmes have a
greater effect on participation in physical activity
than short term supervised programmes.
Improvements were only seen when follow up
periods were longer than twelve months.
76
References for included studies:
Hebestreit H, Kieser S, Junge S, Ballmann M, Hebestreit
A,Schindler C, et al.Long-term effects of a partially
supervised conditioning programme in cystic fibrosis.
European Respiratory Journal 2010;35(3):578–83.
Reisman JJ, Schneiderman-Walker J, Corey M, Wilkes
D,Pedder L, Levison H, et al.The role of an organized
exercise program in cystic fibrosis - a three year study
[abstract].
Pediatric Pulmonology 1995;Suppl 12:261. [CRS–ID:
5500100000001555]
Schneiderman-Walker J, Pollock SL, Corey M, Wilkes DD,
Canny GJ, Pedder L, et al.A randomized controlled trial of
a 3-year home exercise program in cystic fibrosis. Journal
of Pediatrics 2000;136(3):304–10.
Selvadurai HC, Blimkie CJ, Meyers N, Mellis CM,Cooper
PJ, Van Asperen PP. Randomized controlled study of inhospital exercise training programs in children with cystic
fibrosis. Pediatric Pulmonology 2002;33(3):194–200.
elvadurai HC, Van Asperen PP, Cooper PJ, Mellis CM,
Blimkie CJ. A randomised controlled study of in-hospital
exercise training programs in children with cystic fibrosis
(CF) [abstract]. Pediatric Pulmonology 1999;Suppl 19:287–8
77
Chest Physiotherapy for Pneumonia in Children
Chaves GSS, Fregonezi GAF, Dias FAL, Ribeiro CTD, Guerra RO, Freitas DA, Parreira VF, Mendonca KMPP
________________________________________________________________________________
In this review the authors assess the effectiveness of
any type of chest physiotherapy for children aged 018 in terms of length of time until clinical resolution.
The authors of this review refer to the wide use of
chest physiotherapy for pneumonia, but
acknowledge that there is weak evidence as to its
benefits, with no known systematic reviews to
assess its effectiveness in children. They refer to the
only systematic review that has been published on
this topic, but it’s focus was on adults, and as none
of the included studies met the standard required to
provide high quality evidence, it could not
demonstrate effectiveness of physiotherapy for
pneumonia for this population.
This review searched for randomised controlled
trials (RCTs), cluster RCTs, and cross-over or quasiRCTs, and from a total of 471 references, only three
studies, all RCTs, met the inclusion criteria
(Lukrafka et al, 2010; Paludo et al, 2008; Zhao et al,
2010). These three trials studied 255 children in
total, aged between 29 days and 12 years, all in a
hospital setting.
Three primary outcome measures were originally
identified:
i) Mortality
ii) Duration of hospital stay
iii) Time to clinical resolution and
peripheral oxygen saturation levels
None of these studies, however, considered
mortality, and the only outcome common to all three
studies was time to clinical resolution, although
how this was measured varied between the studies.
Interventions also varied between the studies, but
the review appraised three types of chest
physiotherapy – standardised respiratory
physiotherapy (SRP), continuous positive airway
pressure (CPAP), and positive expiratory pressure
78
(PEP). The authors summarise the results of the
review by stating that a combination of SRP and
CPAP were not shown to decrease the time to
clinical resolution, or duration of hospital stay,
although some clinical parameters that could
contribute to these outcomes were shown to
improve. CPAP appears to improve oxygen
saturation.
The authors were not able to perform meta-analysis
of the data in this review as the three studies
reported different data with differences in statistical
presentation.
The review concludes that there is currently
insufficient evidence to justify the application of
chest physiotherapy in children with pneumonia.
However, they point out the clear need for more
high quality RCTs on this topic.
Main Reference:
Chaves GSS, Fregonezi GAF, Dias FAL, Ribeiro CTD,
Guerra RO, Freitas DA, Parreira VF, Mendonca KMPP.
Chest physiotherapy for pneumonia in children. Cochrane
Database of Systematic Reviews 2013, Issue 9. Art. No.:
CD010277. DOI:10.1002/14651858.CD010277.pub2.
Reference for Included Studies:
Lukrafka JL, Fuchs SC, Fischer GB, Flores JA, Fachel
JM,Castro-Rodriguez JA. Chest physiotherapy in
paediatric patients hospitalised with community-acquired
pneumonia:a randomised clinical trial. Archives of Disease
in Childhood2012;97:967–71.
Paludo C, Zhang L, Lincho CS, Lemos DV, Real GG,
Bergamin JA. Chest physical therapy for children
hospitalised with acute pneumonia: a randomised
controlled trial. Thorax 2008;63:791–4.
Zhao S. Nasal continuous positive airway pressure for the
treatment of severe pneumonia in children from the
plateau area: clinical analysis of 47 cases. Chinese Journal of
Contemporary Pediatrics 2010;12:226–7.
Submissions to the APCP Journal
The APCP Journal aims to disseminate original
research, facilitate continuing medical education
and to provide an opportunity to debate
controversial issues in paediatric physiotherapy.
Listed below are the different types of submissions
that will be considered for publication in the APCP
Journal with guidance on how to write and format
your work to maximise the chances of your
submission being successful. The Editorial Board
also welcome pre-submission questions and will be
happy to advise further. Please contact the Journal
Editor via the contact page on the APCP website
(selecting ‘Journal’ for category of enquiry) or via
the APCP Administrator ( va@apcp.org.uk ) for
guidance or pre-submission advice.
Original Research Reports
Original research in many formats, including
quantitative and qualitative research, case series and
case reports. These articles should be 4,500 words
or less, excluding the references and abstract. All
submissions in this category will be subject to
anonymous peer review by two reviewers.
Research Papers
Research papers should generally follow the ‘IMRD’
pattern (Introduction, Methods, Results and
Discussion). When writing your paper, it is usually
best to start with the most important parts, the
methods and results, before writing the discussion,
introduction and conclusion.
The methods section should include sufficient
information to enable other clinicians to reproduce
your work. Any work involving human or animal
subjects must have appropriate ethical approval
from the relevant Research Ethics Committee. In
addition, written permission from children, parents
or guardians to publish photographs of individuals
must be submitted. The methods section should
also include details of statistical methods if they are
used and state which software, if any, was used to
obtain the results. Any apparatus used in the study
should be reported in terms of manufacturer and
location (city, county, country).
The results section should be clear and easily
understood. Rather than presenting the reader with
masses of data, it often helps to construct your
results to tell a story, taking the reader step by step
through your findings. Do not present data twice in
both text and tables/figures, and do not include
material that belongs in the discussion, i.e. present
results only, not interpretation. Consider how
statistical data is presented, ensure that descriptive
and inferential statistics are used appropriately to
provide meaning to the data collected.
Tables and figures should be numbered
consecutively as they are referred to in the text, and
placed after the references on a new sheet.
Abbreviations should be explained in a footnote and
only horizontal lines should be used. Table and
figure captions/legends should be included on a
separate sheet.
The discussion will allow you to succinctly
summarise the major findings of your work and
explain its relevance in terms of the available
literature and current practice. It is helpful if the
first paragraph briefly summarises the major
findings. The discussion will also allow you to
address any potential weaknesses in the
methodology and justify why the research was
performed in a particular way. It is important to
keep the discussion relevant to the results obtained.
Ideally the introduction should be short and engage
the reader, explaining why the paper is relevant to
clinical practice. Often a brief summary of the
existing literature highlighting the need for this
particular research is useful, as it leads directly to
the research question being asked.
Finally the title and abstract can be written. The
abstract should be structured (limited to 300 words)
consisting of ‘Background and Purpose’ (why the
research was done), ‘Method’ (what was done),
‘Results’ (what was found) and ‘Conclusion’ (what
was concluded). The title itself should describe the
contents of the paper succinctly and accurately.
Scholarly Papers
Discursive papers sharing ideas or experiences in
specific areas of practice can be structured more
freely but should still include an ‘Introduction’,
‘Discussion’, and ‘Conclusions’. Scholarly papers
should be no longer than 4,500 words.
Case Studies and Case Series
The format for case studies and case series differs
from that given above and should start with an
‘Introduction’, followed by ‘Case Report’ (history,
investigations, treatments, outcome), ‘Discussion’
and ‘Conclusion’. Case reports may be notable
because they either focus on a rare condition or on a
new method of treatment. The use of false names in
case reports is encouraged but if a child is
recognisable in the report (due to the condition or
the specific nature of the treatment given), then
written consent for publication should be obtained.
Case reports should be no longer than 2,500 words.
Audit Reports
Reports of clinical audit should include an
‘Introduction’, ‘Standard Setting’ (with appropriate
79
Chest Physiotherapy for Pneumonia in Children
Chaves GSS, Fregonezi GAF, Dias FAL, Ribeiro CTD, Guerra RO, Freitas DA, Parreira VF, Mendonca KMPP
________________________________________________________________________________
In this review the authors assess the effectiveness of
any type of chest physiotherapy for children aged 018 in terms of length of time until clinical resolution.
The authors of this review refer to the wide use of
chest physiotherapy for pneumonia, but
acknowledge that there is weak evidence as to its
benefits, with no known systematic reviews to
assess its effectiveness in children. They refer to the
only systematic review that has been published on
this topic, but it’s focus was on adults, and as none
of the included studies met the standard required to
provide high quality evidence, it could not
demonstrate effectiveness of physiotherapy for
pneumonia for this population.
This review searched for randomised controlled
trials (RCTs), cluster RCTs, and cross-over or quasiRCTs, and from a total of 471 references, only three
studies, all RCTs, met the inclusion criteria
(Lukrafka et al, 2010; Paludo et al, 2008; Zhao et al,
2010). These three trials studied 255 children in
total, aged between 29 days and 12 years, all in a
hospital setting.
Three primary outcome measures were originally
identified:
i) Mortality
ii) Duration of hospital stay
iii) Time to clinical resolution and
peripheral oxygen saturation levels
None of these studies, however, considered
mortality, and the only outcome common to all three
studies was time to clinical resolution, although
how this was measured varied between the studies.
Interventions also varied between the studies, but
the review appraised three types of chest
physiotherapy – standardised respiratory
physiotherapy (SRP), continuous positive airway
pressure (CPAP), and positive expiratory pressure
78
(PEP). The authors summarise the results of the
review by stating that a combination of SRP and
CPAP were not shown to decrease the time to
clinical resolution, or duration of hospital stay,
although some clinical parameters that could
contribute to these outcomes were shown to
improve. CPAP appears to improve oxygen
saturation.
The authors were not able to perform meta-analysis
of the data in this review as the three studies
reported different data with differences in statistical
presentation.
The review concludes that there is currently
insufficient evidence to justify the application of
chest physiotherapy in children with pneumonia.
However, they point out the clear need for more
high quality RCTs on this topic.
Main Reference:
Chaves GSS, Fregonezi GAF, Dias FAL, Ribeiro CTD,
Guerra RO, Freitas DA, Parreira VF, Mendonca KMPP.
Chest physiotherapy for pneumonia in children. Cochrane
Database of Systematic Reviews 2013, Issue 9. Art. No.:
CD010277. DOI:10.1002/14651858.CD010277.pub2.
Reference for Included Studies:
Lukrafka JL, Fuchs SC, Fischer GB, Flores JA, Fachel
JM,Castro-Rodriguez JA. Chest physiotherapy in
paediatric patients hospitalised with community-acquired
pneumonia:a randomised clinical trial. Archives of Disease
in Childhood2012;97:967–71.
Paludo C, Zhang L, Lincho CS, Lemos DV, Real GG,
Bergamin JA. Chest physical therapy for children
hospitalised with acute pneumonia: a randomised
controlled trial. Thorax 2008;63:791–4.
Zhao S. Nasal continuous positive airway pressure for the
treatment of severe pneumonia in children from the
plateau area: clinical analysis of 47 cases. Chinese Journal of
Contemporary Pediatrics 2010;12:226–7.
Submissions to the APCP Journal
The APCP Journal aims to disseminate original
research, facilitate continuing medical education
and to provide an opportunity to debate
controversial issues in paediatric physiotherapy.
Listed below are the different types of submissions
that will be considered for publication in the APCP
Journal with guidance on how to write and format
your work to maximise the chances of your
submission being successful. The Editorial Board
also welcome pre-submission questions and will be
happy to advise further. Please contact the Journal
Editor via the contact page on the APCP website
(selecting ‘Journal’ for category of enquiry) or via
the APCP Administrator ( va@apcp.org.uk ) for
guidance or pre-submission advice.
Original Research Reports
Original research in many formats, including
quantitative and qualitative research, case series and
case reports. These articles should be 4,500 words
or less, excluding the references and abstract. All
submissions in this category will be subject to
anonymous peer review by two reviewers.
Research Papers
Research papers should generally follow the ‘IMRD’
pattern (Introduction, Methods, Results and
Discussion). When writing your paper, it is usually
best to start with the most important parts, the
methods and results, before writing the discussion,
introduction and conclusion.
The methods section should include sufficient
information to enable other clinicians to reproduce
your work. Any work involving human or animal
subjects must have appropriate ethical approval
from the relevant Research Ethics Committee. In
addition, written permission from children, parents
or guardians to publish photographs of individuals
must be submitted. The methods section should
also include details of statistical methods if they are
used and state which software, if any, was used to
obtain the results. Any apparatus used in the study
should be reported in terms of manufacturer and
location (city, county, country).
The results section should be clear and easily
understood. Rather than presenting the reader with
masses of data, it often helps to construct your
results to tell a story, taking the reader step by step
through your findings. Do not present data twice in
both text and tables/figures, and do not include
material that belongs in the discussion, i.e. present
results only, not interpretation. Consider how
statistical data is presented, ensure that descriptive
and inferential statistics are used appropriately to
provide meaning to the data collected.
Tables and figures should be numbered
consecutively as they are referred to in the text, and
placed after the references on a new sheet.
Abbreviations should be explained in a footnote and
only horizontal lines should be used. Table and
figure captions/legends should be included on a
separate sheet.
The discussion will allow you to succinctly
summarise the major findings of your work and
explain its relevance in terms of the available
literature and current practice. It is helpful if the
first paragraph briefly summarises the major
findings. The discussion will also allow you to
address any potential weaknesses in the
methodology and justify why the research was
performed in a particular way. It is important to
keep the discussion relevant to the results obtained.
Ideally the introduction should be short and engage
the reader, explaining why the paper is relevant to
clinical practice. Often a brief summary of the
existing literature highlighting the need for this
particular research is useful, as it leads directly to
the research question being asked.
Finally the title and abstract can be written. The
abstract should be structured (limited to 300 words)
consisting of ‘Background and Purpose’ (why the
research was done), ‘Method’ (what was done),
‘Results’ (what was found) and ‘Conclusion’ (what
was concluded). The title itself should describe the
contents of the paper succinctly and accurately.
Scholarly Papers
Discursive papers sharing ideas or experiences in
specific areas of practice can be structured more
freely but should still include an ‘Introduction’,
‘Discussion’, and ‘Conclusions’. Scholarly papers
Case Studies and Case Series
The format for case studies and case series differs
from that given above and should start with an
‘Introduction’, followed by ‘Case Report’ (history,
investigations, treatments, outcome), ‘Discussion’
and ‘Conclusion’. Case reports may be notable
because they either focus on a rare condition or on a
new method of treatment. The use of false names in
case reports is encouraged but if a child is
recognisable in the report (due to the condition or
the specific nature of the treatment given), then
written consent for publication should be obtained.
Case reports should be no longer than 2,500 words.
Audit Reports
Reports of clinical audit should include an
‘Introduction’, ‘Standard Setting’ (with appropriate
79
reference to the available literature), ‘Method’,
‘Results’, ‘Discussion’, and ‘Conclusion’. These
Review Papers
Systematic reviews undertake specific methodology
and focus on a specific question, perform a
thorough literature search and critical appraisal of
individual studies using strict criteria. Less formal
review articles will summarise the current literature
on a particular topic. The Cochrane Collaboration
has published a handbook on conducting systematic
reviews (http://www.cochrane-handbook.org/)
and you should structure your review in terms of
‘Introduction’, ‘Objectives’, ‘Methods’, ‘Results’,
‘Discussion’, and ‘Conclusion’.
There are published criteria that should be applied
to the analysis of randomised controlled trials:
the Delphi criteria
(http://www.ncbi.nlm.
nih.gov/pubmed/10086815)
the PEDro scale
(http:// www.pedro.org.au/scale_item.html)
the MOOSE guidelines should be applied to the
analysis of observational studies
(http://www.consortstatement.org/mod_product/
uplo ads/MOOSE%20Statement%202000.pdf).
Review papers should be no more than 4,500 words.
Technical Evaluation
Technical evaluations describe mechanical or
technical devices used in clinical practice or
education and should include an ‘Introduction’,
‘Method’ including the specifications of the
equipment used and the means of the evaluation,
the ‘Evaluation’, ‘Discussion’ and ‘Conclusion’.
Technical evaluations should be no longer than
2,500 words.
Service Development Report
A service development report should describe
changes in service delivery/management. The
structure of the report can be less formal but should
include an introduction’, description of the service
change(s), outcome and discussion on the
implications for future practice. Service
development reports should be no longer than 2,500
words.
Abstracts of Theses and Dissertations
Abstracts of research projects, audits and
presentations from undergraduate and postgraduate
degrees should be no more than 300 words in length
and structured as a standard abstract
(‘Introduction’, ‘Method’, ‘Results’, ‘Conclusion’).
The Editorial Board would, however, strongly
encourage those considering such a submission to
formulate their work instead as one of the above
80
peer reviewed articles. In such cases, a presubmission enquiry to the editor may be helpful.
Other types of editorial material
The Journal will also consider the following
submissions:
Letters to the editor
Letters to the editor can be on any issue pertinent to
paediatric physiotherapy or to APCP. Letters
should be no more than 500 words long.
Book reviews
Book reviews should be no more than 750 words
long.
Referencing
All work submitted for peer review should be
referenced in the Harvard style:
In text, cite only the author(s) surname(s) followed
by the date of publication, e.g. (Robinson, 1994) or
Robinson (1994). ‘a’, ‘b’, etc., is used to indicate
more than one publication by the same author(s) in
the same year, e.g. 1992a,b). For three or more
authors of a cited paper, name the first followed by
et al, e.g. (Smith et al, 1990).
In the reference list, include articles in journals and
books alphabetically by author. For citations from
journals, give the names and initials of all authors
(year of publication), title of the article, full name of
the journal, volume number, issue number and first
and last page numbers, e.g. Brown A, Green B and
Gold C (2001). ‘The value of exercise’, Physiotherapy,
87, 1, 77-79. Referring to books, give the names and
initials of all authors/editors (year of publication),
title, publisher, place of publication, and the
chapternumber or the page number of the citation
or both, e.g. Gardner, M (2001). The Annotated Alice,
Penguin Books, Harmondsworth, Chap 10, page 210.
The submission process
Email your submission in the first place in Word
format to va@apcp.org.uk, clearly indicating the
nature of the submission e.g. case series, research
project.
Ensure that your copy includes information about
the author (full name, qualifications, email address).
Once your submission has been received you will
receive feedback from the reviewers indicating
whether the copy has been accepted for publication.
There are a number of levels of acceptance:
• acceptance: no amendments required;
• acceptance: minor amendments required;
• acceptance major amendments required;
• rejection: not suitable for publication in the
APCP Journal.
Editor
Cate Naylor
Editorial Board:
Jo Brook
Sue Bush
Sue Coombe
Jeanne Hartley
Lesley Katchburian
Marion Main
Fiona Price
Luke Watson
Aims and scope: the APCP Journal aims to publish original research and other scholarly work related
to paediatric physiotherapy – its scientific basis and clinical application, education of practitioners,
management of services and policy.
Please send your articles for the next edition of the journal to va@apcp.org.uk by 1st July 2014.
Please include your home email address as we are finding that our replies to your NHS addresses are
frequently not delivered.
APCP
PO Box 610
Huntingdon
PE29 9FJ
email: va@apcp.org.uk
website: apcp.csp.org.uk
May 2014
APCP JOURNAL
Articles in this issue ...
Volume 5 Number 1
May 2014
From Stable Standing to Rock and Roll Walking: the
Importance of Alignment, Proportion and Profiles
The Learning Experiences of Parents with Children
Requiring Physiotherapy Intervention
Children with Cerebral Palsy: Perspectives of Using
Standing Frames
Ponseti Method of Clubfoot Treatment: Putting the
JOURNAL
A Literature Review of the Ponseti Method of
Clubfoot Treatment
Dedicated Physiotherapy Clinic for Children with
Down Syndrome
Case Study: The Impact of an Integrated Education /
Therapy Approach on GMFM-66 Scores in a Child with
Cerebral Palsy
A Method to Ease Comparison of Clinical Outcomes in
Children with Cerebral Palsy
apcp.csp.org.uk
May 2014
Professional Network of the Chartered Society of Physiotherapy

18274 Paed. March 04 cover1 - The Chartered Society of

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