Austin Powers

Austin Powers
PEDIATRIC AND ADULT
CYSTIC FIBROSIS CLINICS
AUSTIN, TEXAS
OUT-PATIENT CF TEAM
Coaches:
— John Nash
— Mary Nelson
Doctors:
— Bennie McWilliams- Pedi Director
— Jason Fullmer- Adult Director
— Jordan Scalo
— Allan Frank
PAs:
— Greg McClelland
— Kellie Ferro
Patient Reps:
— Bruce Hermes- Pedi Parent
— Jeanne Marie Horton- Adult Patient
Team Members:
— Allie Baker- Pedi Nurse Coordinator
— Kelli Heneghan- Adult Nurse Coordinator
— Isolde Brazil- Research Coordinator
— Leila Terada- Research Specialist
— Jen Reeves- Dietitian
— Melissa Atkinson- Social Worker
— Shine-Ann Pai- Respiratory Therapist
— Laura Russian- Respiratory Therapist
— Maria Vipond- Respiratory Therapist
— Rachel Chambers- Child Life Specialist
VSM: Lessons Learned
•  Lack of communication
•  Palliative Care Support
from specialty providers
and the CF Team
•  Patients were not
well prepared for
transition
•  Major gaps support,
education, and
specialized diagnostic
care identified
throughout the lifespan
•  Difficulty establishing
ongoing mental health
care and emergency
psych services
•  Patient Satisfaction had
not been analyzed in
several years
•  OGTT are not completed
consistently
•  Reproductive Health
Education
Process Improvement Tools
—  Global Aim Statement
and Specific Aim
—  5 Ps
—  Value Stream Map
—  Clinical Compass
—  Relation Coordination
Surveys
—  Spaghetti Stream
Mapping
—  Flow Charts
—  Driver Diagram
—  Run Charts
¡  FEV1
¡  BMI
—  Run Charts???
—  Pre-test for transition
packet
—  Multi-voting for
projects from Boston
Process Improvement Tools
Obeya Room
We Chose to Improve: Transition
Concerns:
Changes:
DCMC Self-­‐ Management GOALS 3-­‐5 years Airway Clearance o
o
Helps gather percussor cups Puts on Vest 6-­‐7 years o
o
Inhaled Therapy o
o
Begins involvement in preparing nebs: squirt saline in neb Holds chamber o
o
o
Enzymes o
o
Counts enzymes with parents Mixes own enzymes in applesauce o
o
o
o
Medications o
Puts pills into pill box with supervision o
o
o
8-­‐12 years Becomes responsible for initiating treatment Helps set up vest o
Becomes responsible for initiating treatment Helps clean up equipment with close supervision Cleans equipment correctly Swallows enzymes Knows which foods need enzymes Takes enzymes correctly when reminded Reminds/requests enzymes within 30 mins /while eating o
Able to name pills and identify action of each Becomes responsible with parent for filling pill sorter Reminds parent when pills are not available at appropriate times o
o
o
o
o
o
o
o
o
o
o
Overall Management o
o
Understand hand hygiene Developmentally appropriate knowledge of CF Helps prepare at least 2 meals per week Developmentally appropriate explanation of disease o
Frequent coughing o
Enzymes o
High calorie foods o
Sharing germs o
Hydration needs o
DCMC Self Management Goals
o
o
o
o
Sets up and puts away equipment More responsible initiating treatment Initiates treatment according to treatment plan Prepares & cleans equipment independently Takes enzymes with minimal supervision or reminder Able to explain how symptoms are related to dose Knows dose times taken side effects Initiates taking meds Take meds consistently Knows how body function relates to reason for taking each med Know dose Knows time taken Knows side effects Prepares and asks questions of team at visit Keeps records of monthly period Takes care of own menstral needs Knows how to use and read a thermometer 13-­‐15 years >16 years o
Responsible for initiating treatment (with supervision) o
Initiates all treatments according to treatment plan o
Initiates treatment according to treatment plan Prepares & cleans equipment independently o
Initiates treatment according to treatment plan Prepares and cleans equipment without supervision o
Takes enzymes o
Correctly o
Consistently without needed to be reminded o
o
o
Takes meds with minimal side effects Responsible for medication inventory Knows side effect of meds and warning signs o
Takes enzymes o
Correctly o
Consistently without needed to be reminded o
Calls pharmacy for refills of enzymes o
o
o
o
Calls to schedule own medical/dental appts o
Keeps calendar of medical appts Sees team alone o
Part of visit o
Entire visit o
Understands how CF effects sexual and reproductive health o
Is independent with taking meds Can verbally identify current medications, reason for use, and method of intake Calls for refills of prescriptions Knows side effects of meds and warning signs Calls Center directly when sick Knows Medical Coverage # (or keeps a file o
On person o
Keeps file of own medical information o
Meet adult doctor and RN o
Tour SMCA o
Understands how CF effects sexual and reproductive health o
PDSA Ramp of Tests
Improve Transi=on We aim to improve TRANSITION to SELF MANAGEMENT with pa,ents leaving the pediatric and entering the adult clinic: improve knowledge of self-­‐management and disease by 25%, with target of 80% of pa,ents 16-­‐19 years going through the full process. #4 #3 #2 #1 PDSA Cycle IV May, 2015 Post tes,ng all par,cipants again in May-­‐
June. Team will u,lize an excel spreadsheet to track pa,ent par,cipa,on and a binder for all documents collected. PDSA Cycle III October, 2014 We will be providing transi,on specific educa,on from September through April. PDSA Cycle II June, 2014 We iden,fied 10 pa,ents ages 15-­‐19 and are u,lizing a pre-­‐test from July-­‐August. PDSA Cycle I March, 2014 The process begins with reviewing old protocol. The process ends with a revised process. By working on the process, we expect consistently u,lizing protocol; improve autonomous care, knowledge, be[er pa,ent sa,sfac,on, team ownership and self-­‐management. 11
Improvement Measurement
Differences and Frequency of Our Meetings
Before
—  Consistent agenda format
every 2nd and 4th
Wednesday
—  Patient prep meeting on
opposite Wednesdays
—  Rotating meeting role
schedule including leader,
recorder, facilitator, and
time keeper
—  Availability to call-in
—  Not always consist on
using the format (80%)
Now
—  Meet every Wednesday
(except 5th week)
—  Use same agenda format
but have added patient
prep to every agenda (first
15 mins)
—  Added monthly 4th
Wednesday transition
specific meeting
—  Added a meeting score
—  Consistently recording
and saving agenda and
minutes
Improvement Plans until December
—  PDSA Cycle III: We will con,nue to provide transi,on specific educa,on from September through April. —  Con,nue to work with our new addi,on to the team ¡  GI provider: Dr. Rangwalla Other 2014 Mentionables
—  New GI addition to the team
¡  Dr Rangwalla (started 9/23)
—  Increased publicity with
various newspapers and news
stations
—  CFF Excellence in Action
—  CF Staff Education Day
recognition
—  NACFC-Abstract Acceptance —  Improved communication
between Out Patient team and
¡  Shine-Ann Pai: Presenter/Poster
inpatient CF providers
¡  Allie Baker: Poster Mentor/
¡ 
¡ 
¡ 
Apprentice Program
Shine-Ann Pai: Respiratory
Therapist Mentor
Kelli Heneghan: Nurse
Coordinator Apprentice
Adrienne Herring: Physical
Therapist Apprentice
—  Port CF
¡ 
¡ 
¡ 
RD: Monday email out on yearly
labs and OGTT
RN: Team rounding
RRT: Liaison team
—  Training for iCan
—  Recognized a discrepancy in
DEXA interpretations
Boston
THANK YOU!
Omaha
Austin
Global Aim -­‐ Create a highly functioning process to interact with adult and pediatric subspecialists involved in care of CF patients Specific Aim – Develop an introduction letter to subspecialists PDSA Cycles – develop protocols for when to refer PDSA Cycles – determine numbers for referral (financial incentive). Insurance breakdown Specific Aim – Develop communication survey PDSA Cycles – contact person, correct contact numbers, pt referral information. How notes are sent. Specific Aim – Involve patient that h as gone through referral process? Specific Aim – Improve education of subspecialists – guidelines info. Lunches. Email. Subspecialist involvement in clinic Specific Aim – Improve RC scores. Share current RC scores with subspecialists PDSA Cycles PDSA Cycles PDSA Cycles Patients
SW
CM
BB
TK
AM
Pretest
Scheduled SW Edu Needs
Visits
7/1/14 9.2.14 11.04.14 Still young check in routine. Status of self-­‐
mgmt
6/24/14 9.23.14
Insurace, college edu (nurse)
RD Edu Needs
RT Edu Needs
MD Edu Needs
RN Edu Needs
DETAILED CF Nutrition Review
General Review
General Review
Medications
11/4-­‐ No education bc pt c/o abd pain
General Nutrition Review General Review
General Review
General Review
9/14-­‐ Edu started 10/14 next visit 12/16
Jul-­‐14 12.23.14
7/15/14
Check in on rountine Review of CF/Nutrition and review; College edu, per pt request. Correct finances, medical ins, answers on pretest
lung trans
General Review
General Review
fertility and genetic counseling, lung transplant; did well on med recall
Full EDU
DETAILED Overview of DETAILED Medication
how CF effects the body
Next appt 12/11
Next appt 11/25
Check in on rountine and review
DETAILED Review of CF/Nutrition
NS
8/5/14
Insurance, finanace, emp, college edu
NA
9/25/2014-­‐ Only completed 1st page
9/2/2014 NOT GRADED
Not coming to clinic
PS, nutritoin wellness; General Review
believes that salt intake is reduced; review CF related illness: Osteo, Salt
NA
NA
Needs additional General overview of what CF and how if effects the body
NA
NA
Check in on rountine and review
General Review
General Review
General Review
Did not check any additional edu needs
NA
NA
NA
NA
NA
Review
Review
Review
Review
Review
ALL
ALL EDU 11.4.14
ALL
ALL
ALL
Min/mod knowlegde of nutrition. Only doing 2 txs/day. General Knowledge
Poor recall
RH
CH
10/14-­‐ RT, RN edu not responsive to RD next appt 1/20
Not coming to clinic
8/14/14
GD
Comments
Inpt 9/24/14 next visit 1/20
RE
DB
Post Test
DB
11.25.14
8/2014-­‐ needs to be graded
Sep-­‐14
GG
9/25/14
NA
Several No Shows
No Appts ?? Move to a different clinic
9.20414 Edu 11.1.14 EDU
Looking forward.
planning for tomorrow and beyond
A guide for pediatric Cystic Fibrosis patients
preparing for the transition to adult care and
independence.
introduction, p2
Looking forward...
planning for tomorrow and beyond...
What is Transition?
Transition for patients with Cystic Fibrosis means gradually moving from pediatric to adult care.
Helping our young adult patients move to adult care in a way that feels comfortable and safe
for both you and your family is an important goal for the whole CF healthcare team.
Becoming an adult means:
 taking responsibility for yourself and your actions
 learning what you need to know to take care of yourself
 managing your own health care
There’s a lot to learn, but your CF team is here to help. We’ll take it one step at a time.
Why start planning now?
The earlier you know the basics of your CF care the better o you’ll be.
The earlier
you know the
basics, the
better!
Just a few decades ago there was no need to discuss transitioning to adult
health care for CF patients. However, with today’s medical advances, individuals with CF are living longer, full lives —going o o college, getting jobs,
and having families of their own.
While your family will remain an important source of emotional support, as you
become an adult more of the responsibility for your CF care will become yours. Eventually, you
will meet with the CF team independently, call in your prescriptions, manage your insurance,
and make decisions about your care.
The greatest
factor for
Taking Ownership
success in adult
Transition from pediatric to adult care can be scary for both patients and
care is “taking
their families, but the greatest factor for success in adult care is “taking
ownership.”
ownership.” Taking ownership means taking personal responsibility for
your treatment. It requires that you no longer try to live as though you don’t have a chronic illness —no longer relying on your parents to remember your treatments, enzymes, and so on .
That doesn’t mean CF takes over your life, but instead means viewing CF as a part of the way
your body works and learning to incorporate that into your daily routine.
Parents
It can be di cult to let go of the reins as parents, but the best way to help your child stay as
healthy as possible over their lifespan is to do whatever you can to help them take responsibility for learning good habits of caring for themselves.
worksheet for parents of youth ages 11-13, p3
Looking forward...
planning for tomorrow and beyond...
School and Work
I plan for my child to go to high school?
Yes
Maybe
No
I plan for my child to complete high school?
Yes
Maybe
No
I plan for my child to go to college or vocational training?
Yes
Maybe
No
I plan for my child to have a job when he/she is an adult?
Yes
Maybe
No
What job(s) do you think your child would like to have?
Living Arrangements
When my child is an adult, I plan for him/her to live:
in his/her own house/apartment (with or without a roommate or spouse).
in her current home with his/her parent(s).
with other members of the family (for example, sibling, aunt, cousin).
in supported community housing (for example, group home).
other:
Independence
When my child is an adult, I plan for him/her to:
drive a car.
Yes
Maybe
No
be financially independent / provide for him/herself.
Yes
Maybe
No
start a family of his/her own.
Yes
Maybe
No
have lots of friends
Yes
Maybe
No
I talk with my child about his/her future:
Yes
Maybe
No
My child talks about his/her future with friends:
Yes
Maybe
No
Discussion Planning
What are your hopes for your child’s future?
worksheet for youth ages 11-13, p4
Looking forward...
planning for tomorrow and beyond...
School and Work
I plan to go to high school?
Yes
Maybe
No
I plan to complete high school?
Yes
Maybe
No
I plan to go to college or vocational training after high school?
Yes
Maybe
No
I plan to have a job when I am an adult?
Yes
Maybe
No
What job(s) do you think might like to have?
Living Arrangements
When I am an adult, I want to live:
in my own house/apartment (with or without a roommate or spouse).
in my current home with my parent(s)/guardian(s).
with other members of my family (for example, sibling, aunt, cousin).
in supported community housing (for example, group home).
other:
Independence
When I am an adult, I want to:
drive a car.
Yes
Maybe
No
be financially independent / have a job.
Yes
Maybe
No
start a family of my own.
Yes
Maybe
No
have lots of friends
Yes
Maybe
No
I talk with my parents about my future.
Yes
Maybe
No
I talk with my friends about my future.
Yes
Maybe
No
Discussion Planning
What are your dreams/goals for the future?
worksheet for youth ages 11-13, p5
Looking forward...
planning for tomorrow and beyond...
There’s lots to know about taking care of yourself. It’s time to start planning and learning!
Pre -teen CF Health Care Independence Checklist
Step 1:
Check off the items that are true for you.
Transition Skills
Step 2:
For skills that
you have not mastered
yet, choose two each
visit that you
want to work on between
now and your next visit. Write in
the date that you started.
At your next clinic visit, mark off
the ones you can do now and
pick two more to practice.
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
I understand the basics of how my lungs work.
I can explain why airway clearance is necessary.
I know how to do airway clearance.
I understand the basics of how my body uses food.
I carry and remember to take my enzymes.
I keep a blood sugar record and bring it to clinic (if applicable).
I understand why salt and fluids are important to avoid dehydration.
I remember to take more salt and fluids when exercising.
I answer some of CF team’s questions about my health.
I can name my medications and what they do for me.
I can explain what it means to have CF.
I understand why some people have CF and others don’t.
Other Important Life Skills Checklist
Transition Skills
I know how to wash the dishes.
Other:
worksheet for youth ages 13 -16, p6
Looking forward...
planning for tomorrow and beyond...
Adolescent CF Health Care Independence Checklist
Step 1:
Check o the items that are true for you.
Transition Skills
Step 2:
For skills that you have not mastered yet,
choose two each visit that you want to work on
between now and your next visit. Write in the
date that you started. At your next clinic visit,
mark o the ones you can do now and pick two
more to practice.
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
I complete airway clearance without being reminded.
I help my parent clean and disinfect my equipment.
I know if my vest ts properly.
I can explain the link between nutrition and lung function.
I can explain how CF nutrition needs di er from others’ needs.
I carry and take enzymes without being reminded.
I keep a list of my medications, amounts, order, and times taken.
I answer questions on my own during clinic visits.
I have practiced meeting with the CF team on my own.
I have met with the dietitian on my own.
I have met with the respiratory therapist on my own.
I have met with the social worker on my own.
I have met with the nurse on my own.
I have met with the pulmonologist on my own.
I understand yearly tests and why they are done.
I have started lling out clinic paperwork with a parent.
I practice calling the CF Center with a parent.
I practice calling the pharmacy for re lls with a parent.
I know the warning signs and when to call the nurse if I’m sick.
Other Important Life Skills Checklist
Transition Skills
I know how to do my own laundry.
I’m active in peer groups (school, extracurriculars, church, etc).
Other:
information for youth ages 13-16, p7
Looking forward...
planning for tomorrow and beyond...
Soon you’ll be old enough to call the CF Center on your own, and now is a great time to start
practicing. We know it can be an intimidating task, so here is an outline to help!
Warning Signs & When to Call for a Sick Visit
• Change in Cough/Congestion
• Change in sputum production or color (coughing blood, etc.)
• Fever over 100.3°
• Increased fatigue
• Change in overall wellbeing
Warning Signs & When to Call for a Sick Visit
Teens: Call Allie the Pediatric Nurse Coordinator at 512-324-9999, and dial extension 86331.
Adults: Call Kelli the Adult Nurse Coordinator at 512-324-9999, and dial extension 86327.
Warning Signs & When to Call for a Sick Visit
• Name
• Current Symtoms
If it is after hours and you have to leave a message, be sure to include:
• Phone #
• Good time to call back
The nurse might also ask about your:
• Current treatments and frequency
• Current medications
Why It’s Important for You to Call (Rather than Your Parents)
As you get older, you’ll become more independent, and soon you’ll be the expert on your
life. You’ll know more about how you feel than your parents. You’ll also have a better idea
of your activities and your busy schedule than your parents. Because of your growing
independence, we will need to hear from you in order to:
1. avoid second-hand or missing information about important symptoms
2. agreeing to a plan of action (for example, making an appointment for a sick
visit of a hospital admission that fits your schedule)
It’s never too early to start practicing! Try a run through with your family. Listen in on your
parents’ calls to the CF Center. Try making a call on your own.
information for youth ages 13-16, p8
Looking forward...
planning for tomorrow and beyond...
It can be tricky to remember which team member to call for different needs. Here is an outline
of the typical issues each member of team addresses, as well as their contact information.
Who to Call When You Have Specific Questions
Nurse: Allie (512-324-9999, x86331 or albaker@seton.org)
Kelli (512-324-9999, x86327 or kdheneghan@seton.org)
• Appointments
• Changes in Health/Sick Visits
• Hospital Admissions
• Scheduling labs, x-rays, and other outpatient testing
• Medication refills and medical equipment (O2, BiPAP, Vest, etc.)
• Scheduling surgical procedures, coordination
• Comprehensive education needs regarding your health
Dietitian: Kim (512-324-9999, x86341 or kbilger@seton.org)
• Digestive concerns
• Changes in stool
• Enzyme and Nutrition Assistance
• CF-related Diabetes and/or bone disease
• Vitamins
• Supplement drinks/Formula/G-tube supplies
Social Worker: Trisha (512-324-9999, x86335 or tktatum@seton.org)
• Health Insurance
• Financial Assistance Programs
• Academic Services (Elementary through College; Public, private or home-school)
• Employment Support (FLMA)
• Legal Issues (Disability, SSI, SSDI)
• Mental, Emotional & Behavioral Health
• Parent Education/Support
• Advance Care Planning
• Basic Needs (Housing, Food, Clothing, Medical Transportation, etc.)
Respiratory Therapist: Shine-Ann (spai@seton.org)
Laura (512-324-0000, x86928 or lmrussian@seton.org)
• Airway clearance techniques, equipment use, and alternatives/options
• Breathing treatment use
• Infection control
Child Life Specialist: Rachael (512-324-0000, x87461 or rachambers@seton.org)
• Pill Swallowing
• Developmentally appropriate diagnosis education
• Education or conversations with peers and siblings
worksheet for youth ages 13 -16, p9
Looking forward...
planning for tomorrow and beyond...
Adolescent Conversations Checklist
I have had the following conversations with a member of my CF team
Future communication expectations for patient and guardian(s)
Lifestyle choices: How smoking, drinking, and drugs affect my health
Reproductive health
Other:
Other:
What Else Can We Do to Help?
What other steps can your
independently?
family take to help prepare you for managing your CF health care
What other steps can your
care independently?
CF team take to help you prepare for managing your CF health
What part of your CF care do you think will be most difficult for you to do on your own?
What part of your CF care do you feel most confident about doing on your own?
Seton Medical Center
1201 West 38th Street
Austin, TX 78705
Phone: 512.324.1000
worksheet for youth ages 16 -18, p10
Looking forward...
planning for tomorrow and beyond...
You’re almost there! Take a look back at how much you’ve accomplished already!
Emerging Adult CF Health Care Independence Checklist
Step 1:
Check off the items that are true for you.
Transition Skills
Step 2:
For skills that you have not mastered
yet, choose two each visit that you want to
work on between now and your next visit.
Write in the date that you started. At your
next clinic visit, mark off the ones you can
do now and pick two more to practice.
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
Skills I’m
Learning
Now
Skills I’ve
Accomplished
Independently
I continue to be independent with airway clearance and respiratory treatments.
I clean my respiratory equipment on my own on weekends.
I continue to be independent with enzymes.
I can list all of my medications, doses, and times taken.
I can explain my medical history (or have a written record).
I make a list of specific questions before each clinic visit.
I meet with the CF team independently for part of my visit.
I monitor my medications and order before they run out.
I call the pharmacy to refill medications when I can.
I pick up my prescriptions (if applicable).
I call the CF Care Center to make appointments when I can.
I fill out clinic paperwork on my own.
I understand my insurance coverage options.
Other Important Life Skills Checklist
Transition Skills
I know how to drive or get around without my parents.
I have a plan(s) for after high school.
I know how to manage my money and budget expenses.
I can prepare a meal for myself.
Other:
worksheet for youth ages 16 -18, p11
Looking forward...
planning for tomorrow and beyond...
Emerging Adult Conversations Checklist
I have had the following conversations with my CF team:
Time frame for starting admissions at adult hospital
Time frame for transferring outpatient care to adult pulmonologist
Insurance plans
Advance Directives
Financial Aid, CF Scholarships, Vocational training
Seton Medical Center Tour
Date I plan to Tour SMC: ___________________
I plan to meet SMC Clinical Manager and other staff: Yes No
Questions I have about SMC:
1. _________________________________________________________________________
2. _________________________________________________________________________
3. _________________________________________________________________________
4. _________________________________________________________________________
5. _________________________________________________________________________
Adult Care Plans
I plan to start hospital admissions at SMC when:
 I graduate from high school
 I turn 18
 Other ________________________
My plan for transferring outpatient care to the adult pulmonologist:
When:_________________________ Who:______________________
Questions I have about transferring to the adult pulmonologist:
1. _________________________________________________________________________
2. _________________________________________________________________________
3. _________________________________________________________________________
worksheet for youth ages 16-18, p12
Looking forward...
planning for tomorrow and beyond...
Information for Seton Medical Center Adult Care Staff
Now is your chance to let SMC staff know more about you. Make a list of things you would like
the staff to know about you and what your preferences are for hospital admissions.
Examples:
• Who typically visits or stays with you in the hospital?
• What time do you like to do your treatments?
• Are you a night owl or an early riser?
• What do you usually do during stays? School work? Rest?
• Hobbies? Interests? Special considerations?
You can share as much or as little as you want.
worksheet for youth ages 16 -18, p13
Looking forward...
planning for tomorrow and beyond...
Other Adult CF Care Options
Not everyone transfers their adult care to SMC; it all depends on your post
-high school plans.
Do you plan to go to college out of state or in a new city? Are you planning to move for a job?
Some young adults choose to keep their care in Austin, even if they do move. It’s all based on
what works best for you, and your CF team is happy to help you make an informed decision
about what’s right for you and your health. No matter what you decide we’re here to help make
the process of transitioning your care as smooth as possible.
There are other great CF centers all over the country. You can find out more here:
http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation -accreditedCareCenters/
Did We Forget Anything?
(1) Check off the topics that you would like to discuss more or learn more about.
(2) On the left, write the member of your CF team with whom you would feel most comfortable
discussing each topic.
Nutrition
Sexuality
Fertility
Genetic counseling and testing
Preventing exacerbations
Lung transplantation
Insurance
Financial help with medication
Telling others (friends, partners, co
-workers, employers) about my CF
Employment considerations
Education (college, vocational training, etc.)
Mental health and available services
Other:
Other:
DCMC Self-­‐ Management GOALS 3-­‐5 years Airway Clearance o
o
Helps gather percussor cups Puts on Vest 6-­‐7 years o
o
Inhaled Therapy o
o
Begins involvement in preparing nebs: squirt saline in neb Holds chamber o
o
o
Enzymes o
o
Counts enzymes with o
parents o
Mixes own enzymes in applesauce o
o
Medications o
Puts pills into pill box with supervision o
o
o
Becomes responsible for initiating treatment Helps set up vest 8-­‐12 years o
o
Becomes o
responsible for initiating treatment Helps clean up o
equipment with close supervision Cleans equipment correctly Swallows enzymes o
Knows which foods need enzymes Takes enzymes o
correctly when reminded Reminds/requests enzymes within 30 o
mins /while eating Able to name pills and identify action of each Becomes responsible with parent for filling pill sorter Reminds parent when pills are not available at appropriate times o
o
o
o
o
o
Overall Management o
o
Understand hand hygiene Developmentally appropriate knowledge of CF Helps prepare at least 2 meals per week Developmentally appropriate explanation of disease o Frequent coughing o Enzymes o High calorie foods o Sharing germs o Hydration needs o
o
o
o
o
Sets up and puts away equipment More responsible initiating treatment Initiates treatment according to treatment plan Prepares & cleans equipment independently Takes enzymes with minimal supervision or reminder Able to explain how symptoms are related to dose Knows dose times taken side effects Initiates taking meds Take meds consistently Knows how body function relates to reason for taking each med Know dose Knows time taken Knows side effects Prepares and asks questions of team at visit Keeps records of monthly period Takes care of own menstral needs Knows how to use and read a thermometer 13-­‐15 years >16 years o
Responsible for initiating treatment (with supervision) o
Initiates all treatments according to treatment plan o
Initiates treatment according to treatment plan Prepares & cleans equipment independently o
Initiates treatment according to treatment plan Prepares and cleans equipment without supervision o
Takes enzymes o Correctly o Consistently without needed to be reminded o
o
o
Takes meds with minimal side effects Responsible for medication inventory Knows side effect of meds and warning signs o
Takes enzymes o Correctly o Consistently without needed to be reminded o Calls pharmacy for refills of enzymes o
o
o
o
Calls to schedule own medical/dental appts o Keeps calendar of medical appts Sees team alone o Part of visit o Entire visit o Understands how CF effects sexual and reproductive health o
Is independent with taking meds Can verbally identify current medications, reason for use, and method of intake Calls for refills of prescriptions Knows side effects of meds and warning signs Calls Center directly when sick Knows Medical Coverage # (or keeps a file o On person o Keeps file of own medical information o Meet adult doctor and RN o Tour SMCA o Understands how CF effects sexual and reproductive health o
My Child’s Current Medications*
Last update done on:
Prescription Medicines
Name of medicine (brand and/or generic)
Over-the Counter Medicines (no prescription needed)
Name of medicine (brand and/or generic)
Dosage—How much taken?
When taken—How often?
When taken—How often?
Color or other notes
Color or other notes
Purpose of medicine—What does it do?
Purpose of medicine—What does it do?
Purpose of medicine—What does it do?
Refill Date
Refill Date
Refill Date
Worksheet
Dosage—How much taken?
Color or other notes
Cystic Fibrosis Family Education Program
Put this worksheet in your CF Travel Folder and share it with your CF health care team.
When taken—How often?
Dosage—How much taken?
Vitamins/Minerals/Nutritional Supplements (including any herbal products)
Name of medicine (brand and/or generic)
Other Notes:
* If you have a computer, you might want to make an electronic list like this that you can update as needed and print!
Copyright © 2012 Baylor College of Medicine