The Transition from Adolescent to Adult Health Care

Dr. Lorraine Bell

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Q: What is “transplant transition” and how did you get involved in this area?

A: To me, “Transplant Transition” is a process of helping young organ transplant recipients progressively prepare themselves for adulthood. It encompasses the years before they transfer to adult health care as well as a period of time afterward.

My interest in transition began over a decade ago. More and more patients I’d known for years were transferring to adult care. Some really struggled, and a small number of them died unexpectedly. I wanted to better understand what was going wrong and how we could improve the situation.

I have also had the fortune to be actively involved in the field of transition with the American Society of Transplantation (AST; http://www.a-s-t.org/). This gave me a wonderful opportunity to organize and chair the International Consensus Conference on Transition for Transplant Recipients. We had more than 60 participants with a diverse range of expertise, and the conference report and recommendations were published in the American Journal of Transplant in 2008. More recently, I’m thrilled to be chairing the AST joint adult-pediatric workgroup on transition. We have some exciting projects underway that build on many of the consensus conference recommendations.

Q: Is transition a concern only for transplant physicians?

A: Definitely not—it’s a continuum and involves all health practitioners who care for patients with a childhood-onset chronic health condition.

Q: When is the ideal time to begin talking about transition? Is there a time frame that one should take into consideration from both the patient and physician perspective?

A: I believe the concept of transition needs to be introduced at a very early stage in the illness. Many families need help preparing their children with chronic health conditions for adulthood and for the challenges and complexities of adult life. It can be so tempting to “overprotect” these children, yet they need to acquire the same educational and social skills as their healthy peers. In addition, they have added responsibility of learning to manage and be responsible for their medical needs.

The actual “transfer-preparation” processes usually start around the age of 11 to 12 years, and continue progressively into early adulthood.

Q: What are the typical challenges of transplant transition?

A: A huge challenge is the timing of transfer—usually it happens during the developmental phase when risk taking peaks and the brain’s executive control mechanisms are not fully established. It may also coincide with other major life events, like getting a first apartment, starting college or work, moving to another city, or involvement in strongly emotional relationships. These can all play havoc with the young person’s adherence to medical treatment.

Other challenges are related to the patients’ preparedness and social maturity. With longstanding chronic illness there can be delays in achievement of social developmental milestones. These youth may not have enough confidence or the skills to advocate for themselves; they may feel lost, bewildered, or even alienated in an adult system of care, where independence is expected and assumed and appointment times are short.

Continuity of health insurance coverage can also be a very big issue.

Q: I suppose that a team approach is the key to a successful transition. Please discuss how important this is, and the roles that each team member plays.

A: A team approach is integral. In the pediatric setting nurses play a pivotal role—usually they provide most of the teaching, preparation, and support for patients and their families throughout the transition process. Social workers help with family difficulties, financial issues, insurance planning, and practicalities, such as transportation, budgeting, and other aspects of independent living. Psychologists contribute in several ways and neurocognitive assessment is one of their key functions. Children with early onset chronic illness may have particular delays or cognitive challenges that require timely intervention to help optimize their educational potential. Psychologists can also help evaluate youth for whom there are concerns about adult decision-making capacity. And, as one would expect, they’re very important in helping with issues of adherence, adaptation, anxiety, depression, and behavior. Adolescent medicine specialists assist with overall preparation, guidance, and support of the process. Some teams also include a nutritionist, pharmacist, and a primary care physician.

Although a team approach is usually the norm in complex pediatric care, it is often an exception in the adult system. Yet cost effectiveness for this approach has been shown in studies of young adult clinics for cystic fibrosis and for diabetes.

Q: Are there any key signs that can help you identify patients who may have some difficulty with transition?

A: There are always surprises, and at times they can be very challenging to predict. For example, the patient one least expects to have a major problem may be the one who ends up in serious difficulty and vice versa. But generally, it seems that adolescents with a good family relationship, effective self-management and self-advocacy skills, and a strong social support system are likely to do best. I worry most about patients who have a lot of rebellious behavior and poor family or peer support. Young people who have dropped out of school are also at risk; they may have low self-esteem, problems getting a job, and health insurance difficulties.

Q: Please tell us about the AST Pediatric Community of Practice Transition Workgroup. What is the makeup of the group and what are your goals and objectives?

A: This is a joint adult and pediatric transition workgroup, and its mission is to foster high-quality interdisciplinary transition practices for adolescent and young adult transplant recipients by facilitating access to evidence-based/expert transition guidelines and tools, collaborative transition research transition education, and advocacy.

The workgroup is comprised of 50 to 60 transplant professionals and is interdisciplinary—we have adult and pediatric physicians, surgeons, nurses, psychologists, and other specialists. In addition to a core steering group, there are several subgroups in development that will work on a web-based transition toolkit, outcome assessment measures, identification of barriers, educational endeavors, and communications.

September 2012 (Vol. 4, Number 9)