What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys

Abstract

When CSHCN Screener administration methods remained similar across years (2001-2004 MEPS), CSHCN prevalence rates were stable. When methods varied between surveys, CSHCN prevalence rates differed. These differences suggest that prevalence is best expressed as a range, rather than as a point estimate. However, once identified, characteristics and health needs of CSHCN were stable across surveys evaluated, each of which has unique strengths for purposes of policy and research.

An analysis of non-response in a Swiss national survey

“…Our response rate (65.7 %) was similar to that of other Swiss national surveys (e.g., Swiss Health Survey; BFS 2008) and to that of U.S. surveys that have used the same instrument (Bethell et al 2008). The response rate was much lower among those parents who were contacted by mail than those contacted by telephone.…”

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

“…Alternately, using the same definition to identify CSHCN when applied to different national data sets can produce a prevalence variation. Bethell et al, (2008) The identifying characteristics and health care needs of CSHCN, such as the need or use of prescription medications' and ' above routine service need or use' screener items and was consistent across the surveys. Children were least likely to be identified as CSHCN based on 'the need or use of specialty therapies'.…”

“…Methods to validly detect many of the less prevalent chronic conditions of childhood require numerous survey items making most applications cost prohibitive (van Dyck, Kogan, McPherson, Weissman, & Newacheck, 2004). Therefore, an estimated 5% to 30% of children nationwide have special health care needs depending on the definition used (Bethell et al, 2008;van der Lee, Mokkinik, Grootenhuis, & Heymans, 2007). Identifying children with special health care needs has been complicated because there has not been a standard definition for CSHCN.…”

“…At the same time, the health care system has been altered by economic and workforce instability. As a result, children with chronic illness or disability are living at home with their families (Bethell et al, 2008).…”

“…An estimated 10.2 million children in the United States, or 1 in 5 households with children, are reported to have a child with a special health care need (Bethell, Read, Blumberg, & Newacheck, 2008; U.S. Department of Health & Human Services [HHS], 2008). Children with special health care needs (CSHCN) have been 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 and related services of a type or amount beyond that required by children generally" (McPherson, Arango, Fox, Lauver, McManus, Newacheck, Perrin, Shonkoff, & Strickland, 1998).…”