Health care transition for youth with special health care needs.

PURPOSE: Youth 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. METHODS: We 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. RESULTS: The 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. CONCLUSIONS: Evidence 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.

Care coordination for children with special health care needs: evaluation of a state experiment.

Care coordination (CC), a component of the medical home, may aid families who have children with special health care needs (CSHCN). Few data link CC to individual patient outcomes. To compare parent-reported outcomes for CSHCN receiving practice-based care coordination with those receiving standard care. This cross-sectional study examined two groups of CSHCN: one that received the services of a care coordinator for a year and one that did not. Parental surveys assessed: access to medical care, practice help and support, satisfaction with services, and parental mental and physical health. Associations between group status and parent-reported outcomes were assessed via regression analyses controlling for sociodemographic and health status variables. We also examined whether CC households who reported higher satisfaction with care had higher scores in the four domains. Parents in the care coordination group reported higher utilization of both primary care and specialist physicians, but did not report better practice help and support, better satisfaction with care, or better overall parental health. Parents in the care coordination group who reported being satisfied with their care rated their PCPs as more helpful than did the comparison families. Parents in this subgroup also reported significantly higher levels of care coordination than did parents in the comparison group. CSHCN appear to have higher PCP and specialist utilization when they receive supplemental care coordination. Additionally, those who are more satisfied with the care coordination they receive are happier with the assistance from their PCP and the overall care coordination provided.

The future of health insurance for children with special health care needs.

CONTEXT: Because of their elevated need for services, health insurance is particularly important for children with special health care needs. In this article we assess how well the current system is meeting the insurance needs of children with special health care needs and how emerging trends in health insurance may affect their well-being. METHODS: We begin with a review of the evidence on the impact of health insurance on the health care experiences of children with special health care needs based on the peer-reviewed literature. We then assess how well the current system meets the needs of these children by using data from 2 editions of the National Survey of Children With Special Health Care Needs. Finally, we present an analysis of recent developments and emerging trends in the health insurance marketplace that may affect this population. RESULTS: Although a high proportion of children with special health care needs have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured children with special health care needs. Emerging insurance products, including consumer-directed health plans, may expose children with special health care needs and their families to greater financial risks. CONCLUSIONS: Health insurance coverage has the potential to secure access to needed care and improve the quality of life for these children while protecting their families from financially burdensome health care expenses. Continued vigilance and advocacy for children and youth with special health care needs are needed to ensure that these children have access to adequate coverage and that they fare well under health care reform.

A family-centered, community-based system of services for children and youth with special health care needs.

OBJECTIVE: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. DESIGN: Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. SETTING: Policy research group and advisors at multiple sites. PARTICIPANTS: Policy researchers, content experts on CYSHCN, family representatives, and state program directors. OUTCOME: Definition of a system of services for CYSHCN. RESULTS: This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the "community-based systems of services" contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. CONCLUSIONS: This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.