Health Care Transition for Youth With Special Health Care Needs

PurposeYouth with special health care needs (YSHCN) increasingly live into adulthood, and approximately 500,000 U.S. youth transition from pediatric to adult health care systems annually. Through a systematic literature review, we sought to (1) determine adult outcomes for YSHCN who have no special transition interventions and (2) identify evidence for strategies that lead to better outcomes, in particular, access to adult health care.MethodsWe searched the medical, nursing, psychology, and social science literature and reviewed selected articles' reference lists. Transition experts also recommended relevant articles. Search criteria included health conditions, transition-related activities, and health care and related outcomes. We selected English-language articles published from 1986 to 2010, with an abstract, description of transition-related interventions (objective 2), and posttransition outcomes. Investigators abstracted study design, population, sample size, description of intervention, data collection methods, and findings.ResultsThe search yielded 3,370 articles, of which 15 met study criteria. Although many YSHCN appear to make the transition to adult health providers successfully, some experience serious gaps in outcomes; those with more complex conditions or with conditions affecting the nervous system appear to have less good transitions. Some evidence supports introducing YSHCN to adult providers before leaving the pediatric system; one study supports using care coordinators to improve outcomes.ConclusionsEvidence regarding programs to facilitate transition for YSHCN is inconclusive. Weak evidence suggests that meeting adult providers before transfer may facilitate posttransition access to care. We recommend additional studies with strong research designs to guide best practice in preparing YSHCN for adulthood.