AST Transition Toolkit

Through the AST Transition Toolkit, the AST 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 these endeavors, adolescents and young adults (AYA) will have the support and skills needed to navigate the transition from pediatric to adult transplant healthcare. This portal is designed as a comprehensive resource center for youth, parents/caregivers, and the transplant multidisciplinary team. 

AST understands that transition of care is essential to promoting and sustaining optimal clinical and psychosocial outcomes in transplantation.  All stakeholders in transition will be supported through:

• Education: Pediatric and adult transplant teams will engage, instruct, 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 encouraged to know that they have a voice and their questions are important. 
• 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. 

INTRODUCTION to TRANSITION of CARE 

• 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 as one component of the transition process 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 primarily been the responsibility of the parent/caregiver, and their personal involvement has been variable based on family dynamics, age and any transition education that the youth or their caregiver may have received. Historically, dismal outcomes have been reported, with graft loss and sometimes even life, after transfer to the adult service. 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 to maintain outcomes. 

• What can we do to help youth and caregivers succeed? 

The single most important thing that the transplant community can do is provide education to create awareness of the need for participation in transition education and provide information to access resources that are available.  Transition teaching about ‘why’ and ‘how’ should be started early in life with the transplant recipient and caregivers as well as the pediatrician. This should continue over several years as well as after the actual transfer to the adult service, to ensure that they receive the help they need to overcome unforeseen obstacles. This approach will allow the young adult transplant recipient to be well prepared and maximize chances of moving forward with a successful, productive life.

• Why is a structured transition program important? 

A structured transition program is associated with improved health outcomes, patient experience, and utilization of health care. Barriers to successful health care transition are multifaceted. A structured, multidisciplinary approach to transition planning is essential in order to overcome these barriers, optimize independence, and assist adolescents and young adults with adherence, self-management, and improved quality of life. In particular, it allows close attention to be paid to neurocognitive development, mental well-being, and social determinants of health.

• 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 10-12 years of age. Pediatric providers should routinely incorporate the assessment of transition readiness utilizing validated transition readiness assessment (TRA) tools in order to identify areas of increased vulnerability and formulate goals of care. 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, and the pediatric team remains the primary care providers until transfer of care has been confirmed.

• Does transition end at transfer? 

Transition does not end when the young adult physically transfers to an adult transplant team and should continue for up to three years post-transfer as the YA 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, 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.