Transition care for children with special health needs.

Background. Around 750,000 children in the United States with special health care needs transition to adult care annually. Fewer than half receive adequate support and services for their transition to adult care. Examples of programs with the potential to enhance transition for children with special heath care needs include use of a separate transition clinic, engagement of a transition coordinator, and a phased transfer within a clinical system. The potential for these programs to be effective is offset by barriers to their implementation. 

Purpose. We developed a technical brief on the state of practice and the current literature around transition care for children with special health care needs to describe current practice and to provide a framework for future research. 

Methods. We had conversations with Key Informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers. We searched online sources for information about currently available programs and resources. We conducted a literature search to identify currently available research on the effectiveness of focused transition programs. 

Findings. The issue of how to provide good transition care for children with special health care needs warrants further attention. The numbers of children with special health care needs reaching adulthood are increasing, and the diversity of their clinical conditions is expanding. The Got Transition resource provides a framework for transition care that can be adapted to serve the individual needs of a given patient population, but there is little evidence that it is used to provide a framework for evaluation in the research literature. Despite identifying numerous descriptions of existing transition care programs or services, we identified only 25 evaluation studies, the majority of which did not include concurrent comparison groups. Most (n=8) were conducted in populations with diabetes, with a smaller literature (n=5) on transplant patients. We identified an additional 12 studies on a range of conditions, with no more than two studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition and provision of educational materials, sometimes using computer-based programming. An important consideration going forward is recognizing that transition care for chronic conditions like diabetes may warrant a different approach than care provided for more heterogeneous and complex conditions, particularly those that include a behavioral or intellectual component. Care for some patients may be appropriately provided in primary care at the community level; for others, it may be appropriately provided only in highly specialized regional or academic centers. Research needs are wide ranging, including both substantive and methodologic concerns. Currently, the field lacks a consistent and accepted way of measuring transition success, and it will be essential to establish consistent goals in order to build an adequate body of literature to affect practice.