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2. Health Services Research for Children with Disabilities

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Address correspondence to: James M. Perrin, M.D. , 50 Staniford Street, #901 , Boston , MA , 02114 (e-mail: perrin.james@mgh.harvard.edu ).

Abstract

Growing numbers of children and adolescents have long-term disabilities, but they often are excluded from health services research on people with disabilities because of concerns about risks and the special problems in studying this population. As a result, we have little information about the epidemiology and characteristics of children and adolescents; the use, organization, and financing of services for them; the best practices; methods of assessing and improving care; ways of keeping them safe and protecting them from medical errors; and basic issues of long-term clinical management.

By deciding on specific criteria for their inclusion, recent research has helped clarify the definition of children's chronic health conditions (McPherson, Arango, Fox, et al. 1998; Perrin, Newacheck, Pless, et al. 1993; Stein, Bauman, Westbrook, et al. 1993). Further work has improved the systematic specification and identification of this population and indicated how different purposes (e.g., epidemiologic research or program eligibility) may determine who is included (Newacheck, Strickland, Shonkoff, et al. 1998; Stein, Westbrook, and Bauman, 1997).

Growing numbers of children and adolescents have long-term disabilities. Research on the epidemiology, clinical care and its improvement, organization, and financing of care for children with disabilities is very limited. Given the cost burden of the nation's chronic diseases and disabilities, the lack of investigation into necessary clinical activities seems remarkable. This article reviews recent research on health services relating to children and adolescents with disabilities and outlines a research agenda in clinical and health services for this population in these study areas.

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