PATIENT NAVIGATION - Ulmanfund.org
Transcription
PATIENT NAVIGATION - Ulmanfund.org
PATIENT NAVIGATION Quarterly Report 2014 PROGRAM OVERVIEW The Ulman Cancer Fund’s (UCF) Adolescent and Young Adult (AYA) Patient Navigation program provides one-on -one support, direct services, and tailored programs and resources to AYAs to ensure they never feel alone during their cancer experience. Working in conjunction with each Cancer Center’s multidisciplinary medical care team, our Patient Navigators assist patients in managing their own cancer journey. They serve as a friendly voice, a cheerleader and a supporter, helping AYAs navigate the unique medical, emotional, financial, educational, and physical needs they have during treatment and into survivorship. While UCFs Patient Navigation program provides core services, our Patient Navigators tailor the program to each institution based on their patient population and varying needs. Children’s National Medical Center (CNMC) is a 283-bed general facility and teaching hospital located in Washington, DC. There are approximately 14,000 admissions annually, with about 5,000 inpatient and 11,000 outpatient surgeries. The hematology and oncology unit, where the UCF Patient Navigator is located, is a 37-bed floor, treating patients from infant to 29 years of age. Patients do not receive radiation at CNMC. The partnership between the UCF and CNMC resulted in the placement of an AYA patient navigator at CNMC in December 2013. The position is currently funded by the Shearer Family in memory of their daughter, Jacqueline Shearer, as part of the Jacqueline Shearer Memorial Fund. For more information on Jacqueline and her story, please visit http://ulmanfund.org/donate/the-jacquelineshearer-memorial-fund/jacquelines-story/ Greater Baltimore Medical Center (GBMC) is a 255-bed medical center (acute and sub-acute care) located in Towson, MD that sees over 26,700 inpatient cases annually. The Malcolm and Sandra Berman Cancer Institute at GBMC provides comprehensive, multidisciplinary cancer care that combines leading specialists with state-of-the -art technology. GBMC is one of the largest community hospitals in the mid-Atlantic region with over 1,300 physicians and 1,100 nurses serving on its medical staff. The UCF and GBMC partnership began in 2011 and resulted in a part-time Adolescent and Young Adult (AYA) Patient Navigator. At GBMC, the Patient Navigator works closely with physicians, nurses, social workers and administrators to support young adults in treatment. The Johns Hopkins Hospital’s Sidney Kimmel Cancer Center is an NCI-designated comprehensive cancer center in Baltimore, MD. It is the only comprehensive cancer center in the state. UCF’s Adolescent and Young Adult (AYA) Patient Navigator is housed within the Kimmel Cancer Center’s Department of Pediatric Oncology. The innovative partnership between UCF, the Department of Pediatric Oncology and the Kimmel Cancer Center launched in January 2012. A UCF-funded AYA Patient Navigator, who serves patients 15 to 25 years old within pediatric oncology, is the centerpiece of this partnership. The AYA Patient Navigator works in conjunction with the Cancer Center’s multi-disciplinary team to assist patients and their families through: individual/family counseling, fertility preservation guidance, resource activation for housing, transportation, and other cancer treatment-related needs, financial assistance, and community/social support. The University of Maryland Marlene and Stewart Greenebaum Cancer Center (UMGCC) is a National Cancer Institute (NCI)-designated cancer center located in Baltimore, MD. At UMGCC, young adult patients receive direct navigation services and support throughout the medical center on the three adult inpatient oncology units, in Stoler Pavilion (Infusion Center and Outpatient Clinic), Radiation Oncology and Pediatric Oncology. Since the program’s inception in 2008, UCF’s AYA Patient Navigation program has provided direct services and resources to young adults and their families living with and surviving cancer. As part of an academic medical community, the UCF Patient Navigator works with the University of Maryland School of Law and Dentistry. AYA patients are served directly in the community through a variety of supportive services such as home visitation, resource coordination and accompanied visits to social services. Walter Reed National Military Medical Cancer (WRNMMC) is the Nation’s Medical Center, proudly serving military beneficiaries in the Washington, D.C. area as well as those from across the country and around the globe. The Murtha Cancer Center at WRNMMC is a modern, patient-centric, tri-service military healthcare facility. As the only DoD Cancer Center of Excellence within the Military Health System, the Murtha Cancer Center offers its patients access to cutting-edge cancer diagnostic and treatment technologies. UCF and WRNMMC officially launched the placement of an Adolescent and Young Adult (AYA) Patient Navigator in May 2013. The Patient Navigator works closely with the Cancer Center’s multidisciplinary team to support our AYA service members, and their families, that are facing a cancer diagnosis. The UCF Patient Navigation Program offers a unique approach to military readiness by providing direct support and access to resources tailored specifically to AYAs within the Uniformed Services. Our UCFs Remote Patient Navigation Program helps adolescents and young adults (AYAs) faced with a cancer diagnosis make sense of it all. We are a friendly voice, a cheerleader and a supporter as you and your loved ones fight cancer and embrace survivorship. UCF offers Remote Navigation services through telephone and email communication support out of our Baltimore, MD office. This one-on-one support is a free service that is AYAs, and their loved ones, at any stage in their cancer diagnosis and from anywhere in the country. For young adults who live local to the Baltimore area, our Remote Patient Navigator can also provide in-person one-on-one support at our offices or onsite at a hospital. AYAs and their families may access our Remote Navigation services by calling 1-888-393-FUND ext 105 or emailing Julie Lanahan at julie@ulmanfund.org. Meet Our Team! For full bios of our patient navigation team, please visit http://ulmanfund.org/meetourteam/ PATIENT NAVIGATORS Allie Isaacson Adolescent and Young Adult Patient Navigator Children’s National Medical Center Alexandra Gubin, MSW, LCSW-C Adolescent and Young Adult Patient Navigator – Johns Hopkins Hospital Meghan Fitzgibbons, MSW, LGSW Adolescent and Young Adult Patient Navigator – Walter Reed National Military Medical Center Allie is UCFs AYA Patient Navigator at Children’s National Medical Center in Washington, DC. Allie is housed in the Teen Room on 4 East in the Center for Cancer and Blood Disorders. In addition to providing core patient navigation services, Allie manages the Teen Room and plans monthly social events for AYAs on the floor to meet each other and connect. Allie works closely with child life specialists and the nursing team to ensure that AYAs at CNMC have access to age-appropriate resources and activities. Allie is UCFs AYA Patient Navigator at Johns Hopkins Hospital’s Sidney Kimmel Cancer Center. At Johns Hopkins, Allie works with all AYAs ages 15 through 25 treated inpatient and outpatient within the pediatric oncology department. As a licensed clinical social worker, Allie provides supportive counseling related to issues such as fertility preservation, communication strategies to ensure quality of care, coping strategies that help patients adjust to their illness, and survivorship-related issues. Meghan is UCFs AYA Patient Navigator at Walter Reed National Military Medical Center’s Murtha Cancer Center (American Building). Meghan’s work with AYAs spans between all outpatient adult oncology clinics, as well as Pediatric Hematology Oncology, and the inpatient oncology wards. In addition to the core services of the Patient Navigation program, Meghan facilitates the young adult cancer support group at Walter Reed and helps young adults treated at Walter Reed balance their cancer diagnosis and life in the military. Mary Sharon Curran, RN, MS Adolescent and Young Adult Patient Navigator – Greater Baltimore Medical Center Elizabeth Saylor, MSW, CPN Adolescent and Young Adult Patient Navigator – University of Maryland Julie Lanahan, MA Adolescent and Young Adult Remote Patient Navigator – UCF Offices Sharon is the UCFs AYA Patient Navigator at Greater Baltimore Medical Center and a Clinical Associate Professor of Nursing at Towson University. She brings her experience as an educator and psychiatric and mental health nurse to her Patient Navigation role by providing psychological and emotional support to AYAs and their families from the time of diagnosis, through their treatment and survivorship. Sharon also supports AYAs affected by cancer on the Towson campus and co-founded the Institute for Well-Being’s Cancer Wellness Program and Art Therapy Program. As a parent of a young adult survivor, she has a uniquely personal perspective in helping parents of AYA cancer patients. Elizabeth is UCFs AYA Patient Navigator at the University of Maryland’s Greenebaum Cancer Center. She works with AYAs and their families throughout the Cancer Center, but primarily those seen in Stoler Pavilion (Infusion Center and Outpatient Clinic), Radiation Oncology and Pediatric Oncology. She also supports inpatient cancer center units as well as bone marrow transplant Units. Julie is UCFs AYA Remote Patient Navigator. She is based out of the Baltimore, MD office and works with AYAs affected by cancer in the local community as well as nationally through phone and online support. A young adult breast cancer survivor herself, Julie offers a unique perspective having been on the patient side as a young adult. In addition to the core services provided by remote Patient Navigation, Julie organizes UCFs young adult quarterly social events and oversees UCFs scholarship program. She brings her experience as an educator, community outreach worker, researcher, and survivor of childhood cancer to her role as a Patient Navigator, particularly when supporting young urban families from medically underserved communities. At UMGCC, Elizabeth serves on the multidisciplinary Patient Education Committee representing the AYA voice. Elizabeth received her certificate in Patient Navigation from the Harold P. Freeman Institute and has served on numerous committees including the Maryland Comprehensive Cancer Control Plan and the LIVESTRONG Young Adult Alliance. Children’s National Medical Center STATISTICS FROM Q3 Number of patients seen 47 Average age of patients 17 ! Direct Services Provided to Patients Connections to other adolescents and young adults Family and home life adjustment Normalization during treatment Platforms to prevent social isolation Returning to work or school after cancer Number of new patients seen 26 Types of cancer* 13% Sarcoma (Bone, Ewings, Rhabdomyo) 4% Acute Leukemia 4% Brain Cancer 4% Kidney Cancer 4% Microcytic Anemia 70% Other Blood Disorders Gender split of patients 65% Male 15% Female 20% Unrecorded Cancer Trajectory 78% Active treatment 7% Relapses 4% Recently Diagnosed 11% Unrecorded Race / Ethnicity of patients 85% Black or African American 15% Caucasian / Non-Hispanic White *Percentage numbers are rounded to nearest whole Location 50% Maryland 40% Prince George’s Country 5% Montgomery County 5% Southern Maryland (Charles, Calvert, St.Marys) 10% Washington, DC 5% Northern Virginia 20% Other 15% Unrecorded Children’s National Medical Center PROGRAM HIGHLIGHTS Hosted a “Meet and Greet” with the cast of the Lion King musical for patients and their families with a question and answer session (how did they get started as performers, what as the funniest moment that has ever happened on stage, etc.). Afterwards, held a movie viewing with snacks and gift bags. Provided video game consoles, games, and movies to teen and young adult patients on isolation and patients in bone-marrow transplant (BMT). These patients are unable to go into the Teen Room and appreciate having something to do while on isolation. Hosted a “Divergent” (popular Teen book series) party in the Teen Room where teens took faction quizzes, ate cakepops, and watched the “Divergent” movie. Attended the OMG EAST event hosted by Stupid Cancer and exhibited on behalf of the UCF. Continue to keep the Teen Room open on a regular basis for teens and young adults to visit and spend time out of their rooms. Worked with the UCF team to host an outpatient event – a Nationals baseball game – for teens and young adults and their families. Continue to foster relationships between patients by hosting more teen and young adult-appropriate activities in the Teen Room such as Monopoly, Wii game tournaments, and Origami lessons. HOW WE CHANGE LIVES Christa 25, Osteosarcoma Christa is a 25-year old patient at Children’s National. As one of the older patients at a pediatric hospital, Christa really appreciates having a patient navigator here that has knowledge about young adult issues. Christa frequently uses the nail polish, DVDs, and Wii games in the Teen Room. She also looks forward to outpatient events with Walter Reed so she can meet others her age. Christa’s favorite event at the hospital so far has been the Lion King cast visit. Christa is an actress and singer and loved hearing about their experiences on stage. She even got an email address and plans to keep in contact with one of the cast members! Christa also served as a guest blog “responder” to UCFs #facingtheissues post, The Chemo Side Effect Check List, highlighting a few side effects of chemo she faced as a young adult. Greater Baltimore Medical Center’s Sandra and Malcolm Berman Cancer Institute STATISTICS FROM Q3 Number of patients seen 60** Average age of Patients 34 ! Direct Services Provided to Patients Connection to other AYAs Enhancement of social support network One-on-one support for patient and caregivers Resource coordination Number of new patients seen 20 Types of cancer* 60% Breast 15% Ovarian 5% Hodgkin’s Lymphoma 5% Melanoma 5% Non-Hodgkin’s Lymphoma 5% Testicular 5% Thyroid Gender split of patients 90% Female 10% Male Cancer Trajectory 100% in Active Treatment Race / Ethnicity of patients 90% Caucasian / Non-Hispanic White 10% Black or African American *Percentage numbers are rounded to nearest whole **Patient Interactions Location 100% Maryland 55% Baltimore County 20% Baltimore City 15% Anne Arundel County 5% Carroll County 5% Harford County Greater Baltimore Medical Center’s Sandra and Malcolm Berman Cancer Institute PROGRAM HIGHLIGHTS Connected with Bay West Endocrinologist at GBMC and initiated support to young adult cancer patients (mainly thyroid cancer) in that practice. TESTIMONIALS Accepted to present at The Academy of Oncology Nurses and Patient Navigators on the collaboration between the UCF Patient Navigators, the treating medical oncologists in the clinical sites served by the UCF Patient Navigation, and the Towson University’s Institute for Well-Being, on the Cancer Wellness Program. Supported and advocated for young adult patients and their families to include assisting patient with communication needs and concerns they have when addressing the oncology team Connected young adult patients to peer support with other young adult cancer patients or survivors. Assisted patients and families to identify quality of life issues and how they might best achieve maximum quality of life in the context of their cancer experience Sustained therapeutic support provided to patients overtime through diagnosis, treatment and into survivorship Served as a resource to the GBMC oncology staff related to young adult-specific patient and family psychosocial needs Invited a young adult thyroid cancer survivor and a GBMC Milton Dance Head and Neck Cancer Patient Nurse to speak to the UCF staff on the topic of “Compassion Fatigue”. Represented the UCF at the GBMC Legacy Chase Event in the Survivorship Tent. Continue to work with Towson University’s Institute for Well -Being on their Cancer Wellness Program, which is a free program offered to cancer survivors in the Baltimore Metro Area. Referrals of cancer patients and survivors to the program occur via the partnership between the UCF Patient Navigator, the treating oncologists in the clinical setting, and Towson University. Patient Story Sharon has provided support to a 33 year-old patient with ovarian cancer who was diagnosed while pregnant with her third child. She delivered a healthy daughter, but now is the mother of an infant and two young children undergoing intensive chemotherapy. She is genuinely very positive, although recognizes the need for emotional support and is very open to the support offered by the UCF, specifically by Sharon in the role of young adult nurse patient navigator. Through introductions facilitated by Sharon, she has connected with other young adult patients at GBMC, supporting one another during infusions. These connections at GBMC have positively enhanced her cancer experience. Lisa Kight, RN Sandra & Malcolm Berman Cancer Center at GBMC I have been having the pleasure of working with Sharon collaboratively with young patients that are being seen for their cancer treatments at GBMC. Sharon is a kind, compassionate and understanding part of our nursing team who helps us understand the struggles that our young patients and their families are dealing with. She offers our patients support from the very beginning of their cancer journey, regardless of what their needs are. Sharon is very accessible and is always following through with her patients, even if they have completed their treatment. As the mother of a young adult cancer survivor, she has great insight on the stessors of the patient and their family during treatment. Sharon has a dynamic personality and we really enjoy working with her from both a personal and a professional stand point. Johns Hopkins Medicine’s Sidney Kimmel Comprehensive Cancer Center STATISTICS FROM Q3 Number of patients seen 40 Average age of Patients 19 ! Direct Services Provided to Patients Implications of treatment Communication with clinical team Normalization during treatment Returning to work or school Support for caregivers Number of new patients seen 10 Types of cancer* 50% Sarcoma 23% Acute Leukemia 8% Brain Cancer 8% Hodgkin’s Lymphoma 3% B Cell Lymphoma 3% Chronic Leukemia 3% Burkitt’s Lymphoma 3% T Cell Lymphoma 3% Other Blood Disorder Gender split of patients 67.5% Male 32.5% Female Cancer Trajectory 78% Active Treatment 15% Recently Diagnosed 5% Relapse 3% Off Treatment < 1 Year Race / Ethnicity of patients 68% Caucasian / Non-Hispanic White 23% Black or African American 5% Asian 3% Hispanic 3% Middle Eastern *Percentage numbers are rounded to nearest whole Location 80% Maryland 13% Baltimore City 13% Baltimore County 13% Howard County 10% Frederick County 10% Montgomery County 8% Anne Arundel 5% Harford County 3% Caroll County 3% Cecil County 5% Florida 3% Indiana 3% Pennsylvania 3% Virginia 3% No Formal Place of Residence 3% International Johns Hopkins ’s Sidney Kimmel Comprehensive Cancer Center PROGRAM HIGHLIGHTS Participated in a filmed interview for Teen Cancer America’s upcoming documentary on the experience of adolescent and young adult cancer in the United States. Highlighted UCF’s adolescent and young adult patient navigator role at Hopkins and the partnership between UCF and Hopkins. Promoted UCF quarterly social activity (Orioles game) to patients and families and secured attendance at the game. Guided multiple patients in a discussion about fertility risk of treatment as well as preservation options. Provided the appropriate resource information and next steps. Continue to serve as an integral part of fertility preservation efforts of adolescent and young adult cancer patients in Pediatric Oncology at The Johns Hopkins Hospital. On behalf of Ulman Cancer Fund, managed its “Mission to Vine,” a run to raise awareness for young adults with cancer, Facebook group, for patients and runners to connect with each other during the run. Patient navigator secured clinical licensure in social work. Participated in discussions between UCF and Hopkins about potential partnership for walking program. PHOTOS Ashley F., 22, Angiosarcoma The University of Maryland’s Marlene & Stewart Greenebaum Cancer Center STATISTICS FROM Q3 Number of patients seen 43 Age range / Average age of Patients* 21 ! Direct Services Provided to Patients Support in family and home life during and after treatment Connetion to community mental health services while in treatment Normalization during treatment Resources for returning to work or school Number of new patients seen 26 Gender split of patients 62% Male 38% Female Race / Ethnicity of patients* 58% Caucasian / Non-Hispanic White 38% Black or African American 4% Middle Eastern Types of cancer* 25% Acute Leukemia 21% Hodgkins Lymphoma 13% Breast Cancer 8% Head / Neck Cancer 8% Non-Hodgkins Lymphoma 8% Sarcoma 4% Aplastic Anemia** 4% Brain Cancer 4% Colorectal Cancer 4% Melanoma Cancer Trajectory 46% Recently Diagnosed 29% in Active Treatment 17% Relapse 4% Long-Term Off Treatment (>2 years) 3% Off Treatment (< 2 Years) *Percentage numbers are rounded to nearest whole Location 92% Maryland 21% Baltimore City 13% Anne Arundel County 13% Baltimore County 13% Howard County 8% Frederick / Carroll County 8% Montgomery County 4% Prince George’s Country 4% Harford / Cecil County 4% New York 4% Pennsylvania The University of Maryland’s Marlene & Stewart Greenebaum Cancer Center PROGRAM HIGHLIGHTS With Union Memorial’s ART lab closing, identified a new solution for fertility preservation for young adult male oncology patients at UMGCC. Elizabeth worked with CryoChoice to develop a process for young adult patients and facilitated two sperm bankings under this new process. For one patient, Elizabeth was able to guide the patient through the new process with CryoChoice within a timeframe of two days after learning Union was closing. Served as conduit between an out-of-town relative of a young adult patient and the medical team. Elizabeth coordinates family meetings when the relative comes to the Baltimore area for work and has connected this relative with key people on her cousin’s medical team. Located a patient lost to follow-up through social media. Working with medical team at UMGCC, re-engaged him in his care and helped him find a medical team in the state where he has moved. Engaged a young adult cancer survivor, UCF summer intern, and UCF scholarship winner to volunteer at UMGCC. This young man is especially helpful with young male patients in their earlytwenties as a peer mentor and openly shares the ups and downs he faced having cancer in college. Patients are responding well to his peer support. TESTIMONIALS Linked a young female patient with compromised fertility, interested in learning about adoption, to a former UCF board member who is a survivor and recently adopted. Connected a patient living with cutaneous lymphoma with the Cutaneous Lymphoma Foundation. She was able to watch videos of other survivors and talk to the executive director who is also a survivor. Before this connection, this young woman had not met anyone in her several years of treatment with this condition. Continue serve as a co-investigator with the University of Maryland Clinical Pharmacy Department and School of Pharmacy on a research evaluation of young adults’ adherence to oral chemotherapy. Explored a potential partnership with Medifast’s Take Shape for Life Program and Dr. Dee Garcia, a health coach for Medifast and former radiation oncologist, to better serve young adult off-treatment survivors who are at risk for developing health complications due to obesity. Carla, Hodgkin Lymphoma & Stem Cell Transplant Survivor Family means a great deal to me. When my hair was falling out again, my brother, along with my nurse, helped me to shave my head. Then to show his support, Juan shaved his own head! My family can’t always be here though and it is really nice to have Elizabeth to talk to. She has been a good listener and provided me with books for my young children so that they can better understand what is happening to me. Elizabeth has also assisted me in setting up transportation and learning about resources to help pay medical and housing bills. Walter Reed National Military Medical Center’s John P. Murtha Cancer Center STATISTICS FROM Q3 Number of patients seen 84 Average age of Patients 28 ! Direct Services Provided to Patients Communication with clinical care team Connection to other AYAs Family and home life during and after treatment Implications of treatment Understanding treatment protocols Number of new patients seen 41 Gender split of patients 58% Male 42% Female Race / Ethnicity of patients 47% Caucasian/Hon-Hispanic White 18% Black or African American 8% Hispanic White 5% Asian 3% Native Hawaiian or Other Pacific Islander 3% Mixed Race 13% Other 3% Unrecorded Types of cancer* 21% Breast Cancer 16% Brain Cancer 11% Acute Leukemia 11% Non-Hodgkin’s Lymphoma 8% Hodgkin’s Lymphoma 8% Sarcoma (Bone, Ewings, Rhabdomya) 5% Colorectal Cancer 5% Head / Neck Cancer 5% Melanoma 3% Cervical Cancer 3% Chronic Leukemia 3% Esophageal 3% Neuroedocrine Cancer Trajectory 63% in Active Treatment 18% Recently Diagnosed 13% Off Treatment (< 2 years) 5% Relapse *Percentage numbers are rounded to nearest whole Location 48% Maryland 14% Anne Arundel County 14% Montgomery County 11% Southern Maryland (Charles, Calvert, St.Marys) 5% Eastern Shore (Kent, Queen Anne’s, etc.) 3% Baltimore County 3% Prince George’s Country 27% Walter Reed Base 19% Virginia 3% New York 3% Washington, DC Walter Reed National Military Medical Center’s John P. Murtha Cancer Center PROGRAM HIGHLIGHTS We engaged ten Walter Reed patients in off-base social activities this quarter, including Jazz in the Garden, an early evening concert where attendees picnic, mingle and enjoy music, and a Nationals baseball game. Patients who attended the baseball game got the see the Nationals’ first no-hitter! The patient navigator worked with the Fairfax Cryobank to set up a referral and direct billing process to make sperm banking easier for young adult male patients. The Ulman Cancer Fund is now set up to cover patients’ consultation fees for fertility cryopreservation. Nine Grant Thornton summer associates delivered more than twenty chemo care bags, which they had assembled in June, to inpatients and outpatients at Walter Reed. As part of the planning committee for the 2014 Young Adult Survivorship Conference, the patient navigator assisted with logistics and set up a pre-conference bowling activity. A young adult support group, facilitated by the pediatric social worker and UCF patient navigator, was started in late July. The group meets every other week, discussing topics from side effects and complementary medicine to mental health issues and relationship dynamics. We average between four and nine attendees at each meeting. The patient navigator joined the Citywide Patient Navigator Network. Its mission is to increase access to quality cancer care by supporting the profession of patient navigation and its sustainability in the DC metropolitan region. A resource shelf with information specific to young adults was created and placed in the hematology-oncology treatment room. Attending the 2014 Oncofertility Consortium, the patient navigator learned about new technology and techniques for fertility preservation and networked with professionals from around the country. TESTIMONIALS Zach is pictured here at Bowlmor in Bethesda, MD, taking part in the Young Adult Survivorship pre-conference event. Zach’s score of 170 blew everyone else’s out of the water! Zach, Brain Cancer During the Jazz in the Garden event, it came to light that Zach, a 20 year old brain tumor patient, had planned to go on a White House tour but would have to miss it due to his chemotherapy schedule. Zach had recently spent a great deal of time as an inpatient and had looked forward to spending some time sight-seeing in Washington, DC. One of UCF’s board members, who connected with Zach and his mother that evening, was able to set up a private tour of the White House before Zach’s next chemotherapy cycle began. This meant a lot to both Zach and his mother and they were grateful for the efforts of the UCF team to provide this unique experience. D p c h b u m t Z s Remote Navigation STATISTICS FROM Q3 Number of patients seen 19 Average age of Patients 27 ! Direct Services Provided to Patients Financial Assistance Connecting to other AYAs Number of new patients seen 19 Gender split of patients 79% Female 21% Male Race / Ethnicity of patients 63% Caucasian/Hon-Hispanic White 25% Black or African American 13% Middle Eastern Types of cancer* 42% Breast Cancer 11% Colorectal Cancer 11% Ovarian Cancer 5% Acute Leukemia 5% Bladder 5% Chondrosarcoma 5% Hodgkins Lymphoma 5% Kidney 5% Non-Hodgkins Lymphoma 5% Thyroid Cancer Cancer Trajectory 72% in Active Treatment 17% Off Treatment (< 2 years) 6% Off Treatment (> 2 years) 6% Recently Diagnosed *Percentage numbers are rounded to nearest whole Location 17% Maryland 12% California 11% New York 6% Arizona 6% Florida 6% Kansas 6% Pennsylvania 6% Nevada 6% Rhode Island 6% Tennessee 6% Texas 6% International 11% Unknown Remote Navigation PROGRAM HIGHLIGHTS Developed standardized patient packets to be distributed when an onsite or remote UCF’s Patient Navigator meets or connects with a patient or family. Standard materials include: UCF patient navigation rack card UCF program rack cards (Cancer to 5K, Helping Others Fight, etc.) UCF general brochure List of young adult specific resources List of “Things to Consider” for young adult diagnosed with cancer Copy of Patient Resource Guide’s Cancer Survivorship issue Revamped UCFs Remote Patient Navigator program to encompass additional opportunities to support young adults affected by cancer in the local community an on a national level. Began outreach to local hospitals to offer remote patient navigation and other direct support services Represented young adults affected by cancer at GBMC’s Legacy Chase event as part of the survivor tent in September 2014 Collaborating with Patient Resource Guide to develop a 16-page Young Adult Cancer issue Developed a standard referral process for young adults and loved ones referred to UCF for support SCHOLARSHIPS There will be 30, $2500 scholarships anticipated for 2015-2016 school year. New Scholarships include: Ryan Hanley Honrary Scholarship renamed to Jamie Roberts Memorial Scholarship (Six scholarships will be awarded by 4K teams) John Duvall Memorial Scholarship (New) Olivia Marquart Scholarship (New) Jeffrey P. Meyer Memorial Scholarship (New) Vittoria Diana Ricardo Memorial Scholarship (New) PHOTOS P • r i o o o o o o • t • o a o • p • a • C