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Survey Describes Prevalence of Children with Special Health Care Needs and Impact on the Family

Chicago Approximately 13 percent of U.S. children have had a special health care need (SHCN), and significant proportions of their families experience financial problems related to the childs condition, according to an article in the September issue of The Archives of Pediatrics & Adolescent Medicine, one of the JAMA/Archives journals.

Children with SHCNs are defined as those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health care-related services of a type or amount beyond that required by children generally, according to the federal Maternal and Child Health Care Bureau. These children are also at risk for mental and behavioral problems, and missing school days, according to the article. Parents of children with SHCNs are less likely to be employed full time and are more likely to have Medicaid insurance, the article states.

Peter C. van Dyck, M.D., M.P.H., from the Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Md., and colleagues designed a study to estimate the number of children with SHCNs in the United States and to evaluate how well their needs were being met. The researchers conducted telephone interviews with the families of 38,866 children with SHCNs younger than 18 years.

The researchers found that an estimated 12.8 percent of U.S. children had an SHCN in 2001. The prevalence of SHCNs was highest among boys, school-age children, and children in lower-income families. Of these children, 17.7 percent experienced unmet health care needs. Almost 30 percent of the families interviewed reported that their childs condition had caused them to cut back on or quit work, and 20.9 percent of the families reported that their childs health care caused financial problems.

Perhaps our most important findings concern the disparities we found in access, satisfaction, and impact on the family, the authors write. We found consistent patterns of disparities whereby children disadvantaged by low family income, minority racial and ethnic status, lack of health insurance, and greater severity of functional limitations also experienced significantly worse access to care than their more advantaged counterparts, write the researchers.

To address the disparities raised by the survey data, we need systemic change that establishes universal, sustainable community systems of services for all affected children and their families, the authors conclude.

(Arch Pediatr Adolesc Med. 2004;158:884-890. Available post-embargo at archpediatrics.com)

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