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Maternal and Child Health Journal
Published in: Maternal and Child Health Journal 1/2008

01-01-2008

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

Authors: Christina D. Bethell, Debra Read, Stephen J. Blumberg, Paul W. Newacheck

Published in: Maternal and Child Health Journal | Issue 1/2008

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Abstract

Objectives

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).

Methods

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.

Results

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.

Conclusions

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.
Footnotes
1
However, the opposite is not the case. Prior research indicates that many children with a chronic condition diagnosis code(s) in their records do not experience health and health service need consequences to qualify them as having a special health care need. In this way, the CSCHN Screener places a higher bar on identification than do diagnostic records. It should be noted that children identified by the CSHCN Screener who do not have diagnoses recorded in records often qualify on health and health need consequences suggesting the presence of a mental, emotional or behavioral health problem versus a physical health condition only.
 
2
The 2002 National Health Interview Survey also included the CSHCN Screener for a 6-month period. The screener was dropped from subsequent surveys, and due to the limited available data, direct estimates from the NHIS have not been included in this analysis.
 
3
A data table summarizing these findings is available upon request.
 
4
A report on a study conducted to evaluate the cultural and methodologic explanations for the lower national rate of CSHCN for children with Spanish speaking parents is available [23].
 
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Metadata
Title
What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys
Authors
Christina D. Bethell
Debra Read
Stephen J. Blumberg
Paul W. Newacheck
Publication date
01-01-2008
Publisher
Springer US
Published in
Maternal and Child Health Journal / Issue 1/2008
Print ISSN: 1092-7875
Electronic ISSN: 1573-6628
DOI
https://doi.org/10.1007/s10995-007-0220-5

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