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Peter C. van Dyck, MD, MPH; Michael D. Kogan, PhD; Merle G. McPherson, MD; Gloria R. Weissman, MA; Paul W. Newacheck, DrPH

Arch Pediatr Adolesc Med. 2004;158:884-890.

Background  Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed.

Objective  To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met.

Setting  The United States.

Participants  Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga.

Main Outcome Measures  Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family.

Results  An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs.

Conclusions  Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.

From the Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Md (Drs van Dyck, Kogan, and McPherson and Ms Weissman), and the Institute for Health Policy Studies, University of California–San Francisco (Dr Newacheck).

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