Through the AST Transition Toolkit, the Pediatric Community of Practice aims to support transplant centers in building programs to educate, equip, and empower pediatric patients and their families with the skills they need to manage their transplant care. Through this endeavor, adolescents and young adults (AYA) will have access to a variety of resources to help them navigate the transition from pediatric to adult transplant healthcare. Additionally, the portal is designed to support the educational needs of caregivers, as well as the pediatric and adult transplant multidisciplinary teams.
AST understands that transition of care is essential to promote and sustain optimal clinical and psychosocial outcomes in transplantation. All stakeholders in transition will be supported through:
- Education: Pediatric and adult transplant teams will engage and collaborate with youth and caregivers to achieve effective transplant self-management skills through participation in a structured transition program.
- Advocacy: Teens will be empowered to speak openly and honestly with their pediatric and adult providers and given the opportunity and support to develop self-advocacy skills in navigating their healthcare. They should be guided in developing a voice in their transplant care and should feel capable to the best of their ability in questioning and discussing their perspective.
- Partnership: Providers, youth, and caregivers should aim to achieve transition goals through collaborative partnerships, shared decision-making, and effective communication within an inclusive and equitable healthcare environment.
Choose Your Path
What is transition?
Transition has been defined as the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” (Blum RW et al 1993) This definition supports a progressive and individualized approach that considers the adolescents’ unique needs.
What is the difference between transition and transfer?
As defined above, transition is a process for adolescents and their families which spans many years and involves moving from pediatric-centered healthcare to an adult model. Transfer is the actual event of moving to the adult setting and occurs at a specific time point. Transition involves developing self-management skills, planning and preparing for transfer, the actual event of transfer, and continuing transition into the adult setting as the young adult integrates into the adult healthcare system. The terms “transition” and “transfer” should not be used interchangeably.
Why is transition important for youth who are transplant recipients?
Transplantation is a life-long investment. Many pediatric transplant recipients have received organ transplants in early childhood. Their care has been the responsibility of the parent/caregiver, and youth engagement and understanding has been variable based on family dynamics, developmental level, and transplant education, which is usually targeted to the caregiver. Patient and graft outcomes have been affected by transfer to adult care with loss to follow-up, graft complications, and death. Adolescent and young adult transplant recipients face many challenges as they move from family-centered care under parental supervision to an adult setting where shared decision-making, and self-advocacy and self-management skills are crucial in maintaining outcomes.
What can we do to help youth and caregivers succeed?
The transplant community should provide education for all stakeholders to create awareness of the need for transition education and resource access to support successful transition of care. Transition teaching about ‘why’ and ‘how’ should be started early on with the transplant recipient and caregivers as well as the pediatric team. Transition of care continues throughout adolescence as the youth gradually assumes more responsibility for care. Adult providers should recognize that transition does not stop at transfer and should continue to support the young adult in skill development until they achieve self-management of their transplant care to the best of their ability.
Why is a structured transition program important?
A structured transition program has been associated with improved health outcomes, patient experience, and utilization of health care. Although there are multiple and complex barriers to successful health care transition, a structured and multidisciplinary approach to transition planning is essential to overcome these challenges, optimize independence, and assist adolescents and young adults in maintaining adherence, acquiring self-management skills, and improving their quality of life. Additionally, it draws attention to neurocognitive development, mental well-being, and social determinants of health so that providers may intervene with select strategies for support.
What are the responsibilities of the pediatric team in transition?
It is essential that the pediatric team initiate transition planning in early adolescence, typically around 11 to 13 years of age. Pediatric providers should routinely assess transition readiness to identify skill level, transplant knowledge, independence, and self-advocacy to formulate transition goals. Treatment goals should be made in consultation with the young adult, caretakers, and adult providers when available. Collaborative practice between pediatric and adult providers is essential, although the pediatric team is the primary provider until the young adult establishes care with the new adult team.
Does transition end at transfer?
Transition of care should continue after transfer as the young adult adapts to the new setting, engages with the adult team, and achieves greater executive functioning skills. Support in the adult setting may include continued reinforcement of transplant education, more frequent and consistent team contact with the YA as they adapt to the adult setting, and additional education on their healthcare as an adult transplant recipient.
What are the responsibilities of the adult team in transition?
The adult team should continue to support the transition process after transfer of care until the YA achieves optimal functioning in the adult healthcare system. The pediatric and adult teams should develop a partnership in transition so that transfer to the new team is seen by the YA as a collaborative process and care is uninterrupted. The adult team should continue to assess transition readiness, provide transplant education as indicated, monitor the need for additional resources in the adult setting, and provide a multidisciplinary team approach that also acknowledges the psychosocial aspects of care.
Arpita Basu, MD, MPH
Emory University
Transplant Nephrologist
I run the young adult renal transplant transition clinic at Emory along with Roshan George MD from children’s Hospital of Atlanta. My work in this clinic has honed my interest in this population with their own unique issues.
Elizabeth Christofferson, PhD
Children's Hospital Colorado/University of Colorado School of Medicine
Associate Professor/Pediatric Psychologist/Clinical Director Transplant Psychology
Transition to adult care is a passion of mine as I enjoy supporting patients as they become more independent and foster life skills that they can rely on in the future. My goal is to optimize physical, emotional, behavioral health before, during, and after transition to adult care in effort to provide whole person care and maximize well-being and quality of life. I believe that transition education can help patients confidently care for their health and reach their health goals.
Bethany Coyne, RN, CPNP-PC, PhD
University of Virginia
Associate Professor
Bethany Coyne is an associate professor at the University of Virginia School of Nursing. She has worked as a Pediatric Nurse Practitioner in Pediatric Nephrology for over 20 years caring for children after renal transplantation. Her research focus has been on outcomes for youth with chronic illness after transitioning from pediatric to adult providers.
Ryan Ford, MD
Emory Transplant Center
Associate Professor of Medicine
I am the co-director of the Emory Young Adult Liver Transplant Transition Clinic and have been seeing these patients for over 10 years. I work with Dr. Nitika Gupta, a pediatric transplant hepatologist. I formed an interest in this population after observing poor clinical outcomes in the absence of a formal transition process.
This toolkit was developed by transplant professionals led by the Pediatric Community of Practice (PSECOP) and approved by the American Society of Transplantation.
Toolkit Authors and Editors:
Anna Gold, PhD, C. Psych.
Megan Keck, PharmD, BCTXP, BCPS
Nanda Kerkar, MD
Lindsay King, MD, MPH
Beverly Kosmach-Park, DNP, RN, FAAN
Hannah Lee, MSN
Song Ong, MD, MRCP, FAST
Beth Piotrowicz, LISW-S, CCTSW
Daniel Ranch, MD, MBA
Jennifer Vittorio, MD
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