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

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.