Skip to main content

Advertisement

Log in

Genetic Counseling, Insurance Status, and Elements of Medical Home: Analysis of the National Survey of Children with Special Health Care Needs

  • Original Paper
  • Published:
Maternal and Child Health Journal Aims and scope Submit manuscript

Abstract

Objective: To examine associations between receiving genetic counseling and the enabling factors of insurance and medical home. Methods: This study uses data from the National Survey of Children with Special Health Care Needs (CSHCN). We use descriptive statistics to characterize families of CSHCN who needed and received genetic counseling as well as families who needed but did not receive genetic counseling. We conduct logistic regression to calculate the association between receiving genetic counseling, insurance status, and medical home while adjusting for child’s age, mother’s education, race, ethnicity, and severity of condition. Results: Seven percent of families with CSHCN, representing 643,432 CSHCN nationwide, reported needing genetic counseling in 2001. Of those in need of genetic counseling, an estimated 123,117 CSHCN reported not receiving genetic counseling. Compared to CSHCN with continuous insurance coverage, CSHCN with interrupted insurance coverage and CSHCN without insurance are significantly less likely to receive genetic counseling. The odds of receiving genetic counseling by CSHCN with medical homes are 2.70 times higher compared to peers without medical homes (95% CI: 1.58, 4.61; p ≤ .001). Among the four elements comprising medical home in this study, family-centered care is the only element significantly associated with receiving genetic counseling. Conclusions: Our analysis presents evidence that receiving genetic counseling is positively associated with having continuous insurance coverage and receiving family-centered care. We discuss how researchers and policy makers may use these finding to explore strategies for improving care systems for CSHCN.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137–40.

    Article  PubMed  CAS  Google Scholar 

  2. National Survey of Children with Special Health Care Needs. Child and adolescent health measurement initiative: data resource center on child and adolescent health, 2005. (www.cshcndata.org). Last accessed November 10, 2006.

  3. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005;159:10–7.

    Article  PubMed  Google Scholar 

  4. The Medical Home. Pediatrics 2002;110:184–6.

    Article  Google Scholar 

  5. Strickland B, McPherson M, Weissman G, et al. Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediatrics 2004;113:1485–92.

    PubMed  Google Scholar 

  6. Achieving and measuring success: a national agenda for Children with Special Health Care Needs. U.S. Department of Health and Human Services, Health Resources and Services Administration: Maternal and Child Health Bureau. (http://mchb.hrsa. gov/programs/specialneeds/measuresuccess.htm). Last accessedNovember 10, 2006.

  7. Centers for Disease Control and Prevention. Progress toward implementing community-based systems of services for Children with Special Health Care Needs: summary tables from the National Survey of Children with Special Health Care Needs, 2001. Department of Health and Human Services; 2003.

  8. Nathanson I, Ramirez-Garnica G, Wiltrout SA. Decreased attendance at cystic fibrosis centers by children covered by managed care insurance. Am J Public Health 2005;95:1958–63.

    Article  PubMed  Google Scholar 

  9. Stein RE, Silver EJ. Are rates of functional limitations associated with access to care? A state-level analysis of the national survey of children with special health care needs. Matern Child Health J 2005;9:S33–9.

    Article  PubMed  Google Scholar 

  10. Mayer ML, Skinner AC, Slifkin RT. Unmet need for routine and specialty care: data from the National Survey of Children with Special Health Care Needs. Pediatrics 2004;113:e109–15.

    Article  PubMed  Google Scholar 

  11. Weller WE, Minkovitz CS, Anderson GF. Utilization of medical and health-related services among school-age children and adolescents with special health care needs (1994 National Health Interview Survey on Disability [NHIS-D] baseline data). Pediatrics 2003;112:593–603.

    Article  PubMed  Google Scholar 

  12. What is a medical home? American academy of Pediatrics: National Center of Medical Home Initiatives for Children with Special Needs, 2003. (http://www.medicalhomeinfo.org/). Last accessed November 10, 2006.

  13. Resta R, Biesecker BB, Bennett RL, et al. A new definition of genetic counseling: national society of genetic counselors’ task force report. J Genet Couns 2006;15:77–83.

    Article  PubMed  Google Scholar 

  14. Wang C, Gonzalez R, Merajver SD. Assessment of genetic testing and related counseling services: current research and future directions. Soc Sci Med 2004;58:1427–42.

    Article  PubMed  Google Scholar 

  15. Sarangi S, Clarke A. Constructing an account by contrast in counselling for childhood genetic testing. Soc Sci Med 2002;54:295–308.

    Article  PubMed  Google Scholar 

  16. Health care needs and access to care. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau: The National Survey of Children with Special Health Care Needs Chartbook 2001, 2004. (http:// mchb.hrsa.gov/chscn/pages/needs.htm). Last accessed December 8, 2006.

  17. Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav 1995;36:1–10.

    Article  PubMed  CAS  Google Scholar 

  18. National Survey of Children with Special Health Care Needs, 2001. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics: State and Local Area Integrated Telephone Survey, 2005. (http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm). Last accessed November 10, 2006.

  19. Survey instrument. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics: National Survey of Children with Special Health Care Needs, 2001, 2005. (http://www.cdc.gov/nchs/about/ major/slaits/cshcn.htm). Last accessed November 10, 2006.

  20. Archer KJ, Lemeshow S. Goodness-of-fit test for a logistic regression model fitted using survey sample data. The Stata Journal 2006;6:97–105.

    Google Scholar 

  21. Taylor AK, Cohen JW, Machlin SR. Being uninsured in 1996 compared to 1987: how has the experience of the uninsured changed over time? Health Serv Res 2001;36:16–31.

    PubMed  CAS  Google Scholar 

  22. Olson LM, Tang SF, Newacheck PW. Children in the United States with discontinuous health insurance coverage. N Engl J Med 2005;353:382–91.

    Article  PubMed  CAS  Google Scholar 

  23. Wong ST, Galbraith A, Kim S, et al. Disparities in the financial burden of children’s healthcare expenditures. Arch Pediatr Adolesc Med 2005;159:1008–13.

    Article  PubMed  Google Scholar 

  24. Galbraith AA, Wong ST, Kim S, et al. Out-of-pocket financial burden for low-income families with children: socioeconomic disparities and effects of insurance. Health Serv Res 2005;40:1722–36.

    Article  PubMed  Google Scholar 

  25. Satchell M, Pati S. Insurance gaps among vulnerable children in the United States, 1999--2001. Pediatrics 2005;116:1155–61.

    Article  PubMed  Google Scholar 

  26. Sobo EJ, Seid M, Reyes Gelhard L. Parent-identified barriers to pediatric health care: a process-oriented model. Health Serv Res 2006;41:148–72.

    Article  PubMed  Google Scholar 

  27. Starfield B, Shi LY. The medical home, access to care, and insurance: a review of evidence. Pediatrics 2004;113:1493–8.

    PubMed  Google Scholar 

  28. Kieckhefer GM, Greek AA, Joesch JM, et al. Presence and characteristics of medical home and health services utilization among children with asthma. J Pediatr Health Care 2005;19:285–92.

    Article  PubMed  Google Scholar 

  29. Lewis C, Robertson AS, Phelps S. Unmet dental care needs among children with special health care needs: implications for the medical home. Pediatrics 2005;116:e426–31.

    Article  PubMed  Google Scholar 

  30. Zimmerman B, Schwalberg R, Gallagher J, et al. Title V roles in coordinating care for children with special health care needs. Health resources and services administration, maternal and child health bureau, division of children with special health care needs, 2000. (http://www.jhsph.edu/wchpc/publications/). Last accessed November 10, 2006.

  31. Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs. MMWR Recomm Rep 2004;53:1–36.

  32. Kaye CI, The committee on genetics. Newborn screening fact sheets. Pediatrics 2006;118:1304–12.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This project was supported in part by Projects # U35MC02601 and # U35MC02602 from the Maternal and Child Health Bureau (Title V, Social Security Act), #11223, Health Resources and Services Administration, Department of Health and Human Services.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Cindy Watts.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Wang, G., Watts, C. Genetic Counseling, Insurance Status, and Elements of Medical Home: Analysis of the National Survey of Children with Special Health Care Needs. Matern Child Health J 11, 559–567 (2007). https://doi.org/10.1007/s10995-007-0200-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10995-007-0200-9

Keywords

Navigation