262282 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

Monday, October 29, 2012 : 9:30 AM - 9:50 AM

Christina Bethell, PhD, MBA, MPH , Department of Pediatrics, School of Medicine, The Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, OR
Paul Newacheck, DrPH , Institute of Health Policy Studies, University of California, San Francisco, San Francisco, CA
Lynda Honberg, MHSA , Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, MD
Nora Wells, MEd , Family Voices, Albuquerque, NM
Cambria Wilhelm, MPH , Dept. of Pediatrics, Oregon Health & Science University, Child and Adolescent Health Measurement Initiative, Portland, OR
Richard Antonelli, MD, MS , Children's Hospital Boston, Harvard Medical School, Boston, MA
Bonnie B. Strickland, PhD , Maternal and Child Health Bureau/Division of Services for Children with Special Health Care Needs, Health Resources and Services Administration, Rockville, MD
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.

Learning Areas:
Diversity and culture
Program planning
Public health or related research

Learning Objectives:
1. Describe whole child health, well being and system performance for children with special health care needs (CSHCN) from birth through adolescence. 2. Assess life course analysis opportunities and gaps within available data sources: the National Survey of Childrenís Health (2003 and 2007) and the National Survey of Children with Special Health Care Needs (2001, 2005/06 and 2009/10). 3. Identify key needs and opportunities for definition and interpretation of the Maternal & Child Health Bureauís system of care model for CSHCN in a way that best integrates life course knowledge.

Keywords: Children With Special Needs, Quality Improvement

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have over 20 years of experience in health services research and statistical analysis in support of developing quality. Professor at the Oregon Health and Science University and the founding director of The Child and Adolescent Health Measurement Initiative.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.