Health Care System Factors Associated with Transition Preparation in Youth with Special Health Care Needs

The aim of this study was to assess: (1) the proportion of youth with special health care needs (YSHCN) with adequate transition preparation, (2) whether transition preparation differs by individual, condition-related and health care system-related factors, and (3) whether specific components of the medical home are associated with adequate transition preparation. The authors conducted a cross-sectional analysis of the 2009-2010 National Survey of Children with Special Health Care Needs, which surveyed a nationally representative sample of 17,114 parents of YSHCN ages 12 to 18 years. Adequate transition preparation was based on positive responses to questions about transition to an adult provider, changing health care needs, maintaining insurance coverage, and if providers encouraged YSHCN to take responsibility for health care needs. Weighted descriptive, bivariate and multivariate analyses were conducted to determine the association between patient and health care system factors and adequate transition preparation. Overall, 32.1% of YSHCN had adequate transition preparation. Older age, female sex, income <= 400% of the poverty level, lack of medical complexity, and having shared decision making, family-centered care, and effective care coordination were associated with increased odds of transition preparation. The majority of YSHCN do not receive adequate transition preparation and younger, male adolescents with medical complexity were less likely to receive transition preparation. Different patterns of disparities were identified for each subcomponent measure of transition preparation, which may help target at-risk populations for specific services. Efforts to improve transition preparation should leverage specific components of the medical home including care coordination, shared decision making, and family-centered care.