Framing systems of care for children with special health care needs for optimal health development over the life course: Implications and priorities for practice, policy and research

Background: At the center of MCH goals for children with special health care needs (CSHCN) is the development of integrated systems of care optimized to address their broad and changing needs over time. The growing body of LifeCourse research compels a careful assessment of systems of care for CSHCN using this perspective. Methods: Data from all years of the National Survey of Children's Health (NSCH, 2003, 2007) and the National Survey of Children with Special Health Care Needs (2001, 2005/06, 2009/10) were analyzed within five domains of LifeCourse: timeline, environment, inequities, timing and health outcomes. A synthetic timeline and bivariate methods were used to characterize needs, health systems, social/environmental context, key outcomes and disparities for CSHCN from birth through adolescence. Results: In general, complexity of health needs increases as CSHCN age while health system performance decreases. This divergence was exasperated over time for at-risk groups of CSHCN such as those living in poverty and those who are non-White. In many cases, outcome trajectories were improved for CSHCN meeting key quality or social elements. For example, at all ages, CSHCN receiving effective care coordination were less likely to repeat a grade than other CSHCN regardless of race, although between-race disparities persisted. Conclusions: Social, home and environmental context plays a pivotal role in the health trajectories for CSHCN. Good performance on key health system performance measures can attenuate or prevent adverse events, highlighting opportunities for improvement. A LifeCourse-centered research approach of existing and upcoming 2011 NSCH illuminates specific policy and practice implications.