Article

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

Department of Pediatrics, The Child and Adolescent Health Measurement Initiative, Oregon Health and Science University, Portland, OR, 97219, USA.
Maternal and Child Health Journal (Impact Factor: 2.24). 02/2008; 12(1):1-14. DOI: 10.1007/s10995-007-0220-5
Source: PubMed

ABSTRACT To compare and consider sources of variation in the prevalence and characteristics of children with special health care needs (CSHCN) identified using the CSHCN Screener across the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN), the 2003 National Survey of Children's Health (NSCH) and the 2001-2004 Medical Expenditures Panel Surveys (MEPS).
For each survey, national prevalence rates and the demographic, health and health need characteristics of CSHCN age 0-17 years were estimated and compared. The stability of CSHCN state prevalence rankings between the NS-CSHCN and NSCH was assessed. Logistic regression analysis produced adjusted odds of identification for subgroups of children. CSHCN Screener sampling and administration were profiled across eight methodology parameters for each survey.
Compared to the NS-CSHCN (12.8%), CSHCN prevalence for children age 0-17 years was 4.8 points higher for the NSCH (17.6%) and 6.0-6.5 points higher across the four 2001-2004 MEPS datasets (18.8-19.3%). The adjusted probability of identification by child's demographic characteristics was stable across all datasets as were state prevalence rankings between the NS-CSHCN and the NSCH. CSHCN identified through the NS-CSHCN were slightly more likely to meet more than one CSHCN Screener criteria, to meet the "above routine need or use of services" criterion and to miss two or more weeks of school due to illness compared to the NSCH, suggesting that CSHCN with less complex and/or serious health consequences may not have been as likely to be identified through the NS-CSHCN. CSHCN prevalence did not change significantly between 2001 and 2004 MEPS, although some off-setting increases or decreases in the proportion of CSHCN meeting specific CSHCN Screener criteria occurred and reflects trends toward increased prescription medication use in children.
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.

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    • "Children with special health care needs (CSHCN) are those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally [1,2]. Among CSHCN is a particularly vulnerable subgroup, known as children with medical complexity (CMC), who are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and extraordinarily high health care use [3]. "
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    BMC Health Services Research 06/2014; 14(1):283. DOI:10.1186/1472-6963-14-283 · 1.66 Impact Factor
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    • "Medical care advances have dramatically reduced pediatric morbidity and mortality - from formerly premature infants with severe chronic lung disease requiring supplemental oxygen and assisted ventilation, through to adolescents with treatment-refractory epilepsy or myriad other medical conditions - while creating new challenges for children and families [1,2]. In the United States, approximately 13 to 20% of households have an infant, child, or adolescent with a special health care need (CSHCN) [3]. The mounting dependency on medical technology, reliance on multitudes of medications, and intense use of medical services place increased demands on parents. "
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    BMC Pediatrics 10/2011; 11(1):95. DOI:10.1186/1471-2431-11-95 · 1.92 Impact Factor
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