What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys
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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.
- McPherson, M., Arango, P., Fox, H. (1998) A new definition of children with special health care needs. Pediatrics 102: pp. 137-140 CrossRef
- Centers for Disease Control and Prevention, Health Resources and Services Administration (2005). Healthy People 2010: Objective 16; Maternal, infant, and child health [accessed on October 2, 2005]. Available at: http://www.healthypeople.gov/Document/HTML/Volume2/16MICH.htm.
- New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America. Final report. DHHS Pub. No. SMA-03–3832. Rockville, MD: US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration. http://www.hhs.gov/newfreedom/init.html.
- Association of Maternal and Child Health Programs (AMCHP). 2003. Reaching the children: The relationship between Title V and Part C [accessed on October 4th, 2005]. Available at: http://www.amchp.org/policy/RTC.pdf.
- Federal Register. Centers for Medicare and Medicaid Services. (2002). Medicaid program, Medicaid managed care. Final rules, 67(115), 40988–41116.
- Bethell, C. D., Read, D., Stein, R. E. (2002) Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics 2: pp. 38-48 CrossRef
- Bethell, C. D., Read, D., Neff, J. (2002) Comparison of the children with special health care needs screener with the questionnaire for identifying children with chronic conditions—Revised. Ambulatory Pediatrics 1: pp. 49-57 CrossRef
- Blumberg, S. J., Olson, L., Frankel, M., et al. (2003). Design and operation of the National Survey of Children with Special Health Care Needs 2001. Vital Health Statistics, 1(41).
- Blumberg, S. J., Olson, L., Frankel, M., et al. (2005). Design and operation of the National Survey of Children’s Health 2003. Vital Health Statistics, 1(43).
- van Dyck, P. C., Kogan, M. D., Heppel, D., et al. (2004). The National Survey of Children’s Health: A new data resource. Maternal and Child Health Journal, 8(3).
- Dyck, P. C., Kogan, M. D., McPherson, M. G. (2004) Prevalence and characteristics of children with special health care needs. Archives Pediatrics Adolescents Medicine 158: pp. 884-890 CrossRef
- Agency for Research and Quality (AHRQ) (2004). MEPS HC-060 2001 Full year consolidated data file, April 2004. http://www.meps.ahrq.gov/mepsweb/data_stats.
- Agency for Research and Quality (AHRQ) (2004). MEPS HC-070 2002 Full year consolidated data file, December 2004. http://www.meps.ahrq.gov/mepsweb/data_stats.
- Agency for Research and Quality (AHRQ) (2005). MEPS HC-079 2003 Full year consolidated data file, November 2005. http://www.meps.ahrq.gov/mepsweb/data_stats.
- Agency for Research and Quality (AHRQ) (2006). MEPS HC-089 2004 Full year consolidated data file, October 2006. http://www.meps.ahrq.gov/mepsweb/data_stats.
- Chevarley, F. M. (2005). Utilization and expenditures for children with special health care needs. Agency for Healthcare Research and Quality Working Paper No. 05010. Available at http://www.meps.ahrq.gov/papers/workingpapers/WP_Feb2005_FMC.pdf.
- Davidoff, A. J. (2004) Identifying children with special health care needs in the National Health Interview Survey: A new resource for policy analysis. Health Services Research 39: pp. 53-71 CrossRef
- Stein, R. E. K., Silver, E. J. (1999) Operationalizing a conceptually based noncategorical definition. A first look at US children with chronic conditions. Archives of Pediatric and Adolescent Medicine 153: pp. 68-74
- Schuman, H., Presser, S. (1981) Questions and answers in attitude surveys: experiments on question form, wording, and context. Academic Press, New York
- Scherpenzeel, A. (2001). Mode effects in panel surveys: A comparison of CAPI and CATI. Swiss Household Panel, Federal Office of Statistics.
- Kasprzyk, D. (2005). Chapter IX, Measurement error in household surveys: sources and measurement. Household sample surveys in developing and transition countries (pp. 171–198). New York: United Nations.
- Shenker, N., & Gentleman, J. (2001). On judging the significance of differences by examining the overlap between confidence intervals. The American Statistician, 55(3), August 2001.
- Read, D., Bethell, C., Blumberg, S. J., et al. (forthcoming). An evaluation of the linguistic and cultural validity of the Spanish language version of the Children with Special Health Care Needs Screener. Maternal and Child Health Journal.
- Cooper, W. O., Hickson, G. B., Fuchs, C. (2004) New users of antipsychotic medications among children enrolled in TennCare. Archives Pediatrics Adolescent Medicine 158: pp. 753-759 CrossRef
- Cox, E. (2003). Patterns of prescription use among commercially insured children. NICHD Colloquia—Scientific issues in implementing Best Pharmaceuticals for Children Act (BPCA), Bethesda, MD.
- Medco Health Solutions, Inc. (2004). Medco study reveals pediatric spending spike on drugs to treat behavioral problems; 77 percent four-year spending rise linked to increased use and medicine costs.
- Groves, R. M., Singer, E., Corning, A. (2000) Leverage-salience theory of survey participation: Description and an illustration. Public Opinion Quarterly 64: pp. 299-308 CrossRef
- Goyder, J. (1987) The silent minority: Nonrespondents on sample surveys. Westview Press, Boulder, CO
- Groves, R. M., Presser, S., Dipko, S. (2004) The role of topic interest in survey participation decisions. Public Opinion Quarterly 68: pp. 2-31 CrossRef
- Hess, J. M., Pascale, J., Rothgeb, J. (2001) The effects on person-level versus household-level questionnaire design on survey estimates and data quality. Public Opinion Quarterly 65: pp. 574-584 CrossRef
- Read, D., & Bethell, C. D. (2002). Resource manual for states and managed care organizations to identify adults and children with special health care needs. Center for Medicaid and Medicare Services [accessed on October 4th, 2005]. Available at http://www.cahmi.org.
- U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration, Maternal and Child Health Bureau (2004). The National Survey of Children with Special Health Care Needs Chartbook 2001. Rockville, MD: U.S. Department of Health and Human Services.
- Child and Adolescent Health Measurement Initiative (CAHMI). (2005). Data Resource Center on Child and Adolescent Health [accessed October 3rd, 2005]. Available at http://www.cshcndata.org and http://www.childhealthdata.org.
- What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys
Maternal and Child Health Journal
Volume 12, Issue 1 , pp 1-14
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Children with special health care needs
- Survey methodology
- National Survey of Children with Special Health Care Needs
- National Survey of Children’s Health
- Medical Expenditures Panel Survey
- CSHCN Screener
- Industry Sectors
- Author Affiliations
- 1. Department of Pediatrics, The Child and Adolescent Health Measurement Initiative, Oregon Health and Science University, Mailcod: CDRC-P, 707 SW Gaines Street, Portland, OR, 97219, USA
- 2. Center for Disease Control and Prevention, National Center for Health Statistics, Atlanta, USA
- 3. Institute for Health Policy Studies, University of California, San Francisco, USA