Planning for Health Care Transitions: Results From the 2005–2006 National Survey of Children With Special Health Care Needs

Abstract

Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.