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APHA Scientific Session and Event Listing

Grace Wang, MPH, Institute for Public Health Genetics, University of Washington, Box 354809, 1107 NE 45th St, Suite 400, Seattle, WA 98105, (206) 543-3670, wangg@u.washington.edu and Carolyn Watts, PhD, Department of Health Services, University of Washington, Box 357660, Seattle, WA 98195.

The National Survey of Children with Special Health Care Needs (CSHCN) was conducted to determine the prevalence of special health care needs among children in the 50 states. It also provides information regarding families' need, use, and experience with the health care system. Specific factors described by the survey include need for genetic counseling, receipt of needed genetic counseling, insurance status, care coordination, and family-centered care.

This study uses the National Survey of Children with Special Health Care Needs (CSHCN) to describe families who needed genetic counseling for hereditary conditions. Statistical methods for analyzing the dataset include descriptive statistics and multivariate logistic regression.

Results of the descriptive analysis show how need for genetic counseling varies by age, ethnicity, gender, income, and other special needs (drugs, limited ability, therapy, other problems). Logistic regression models show associations between receiving needed genetic counseling and insurance status, care coordination, provider communication, out-of-pocket costs, and regular source of care.

The associations discovered by this study suggest areas for continuing policy analysis and research. Families of CSHCN may require additional care coordination and case management to facilitate access to needed services, such as genetic counseling. Additional research will help to determine how family-centered care increases families' understanding and use of specialty services.

The valuable information in the National Survey of Children with Special Health Care Needs can be used to improve care and delivery of services to families with special needs and heritable disorders.

Learning Objectives: At the conclusion of the session, the participant (learner) in this session will be able to

• Describe factors associated with families’ need for genetic counseling.
• Describe health system factors associated with families’ receipt of needed genetic counseling.
• Discuss how researchers and policy makers can use the National Survey of Children with Special Health Care Needs (CSHCN) to inform projects that are intended to improve families’ experiences with the health care system.

Keywords: Genetics, Health Care Utilization

Related Web page: depts.washington.edu/genpol/

Presenting author's disclosure statement:

Not Answered