title: Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001-2010.
abstract: OBJECTIVE
  Access to genetic counseling is increasingly important to guide families' and clinicians' decision making, yet there is limited research on accessibility and affordability of counseling for families with children with special health care needs (CSHCN). Our study's objectives were to measure changes in unmet need for genetic counseling for CSHCN from 2001 to 2010 and to characterize child, family, and health system factors associated with unmet need.
  
  
  METHODS
  We used parent-reported data from the 2001, 2005-2006, and 2009-2010 National Survey of Children With Special Health Care Needs. We used a logistic regression model to measure the impact of survey year, child (sex, age, severity of health condition), family (primary language, household income, insurance, financial problems related to cost of CSHCN's health care), and health system factors (region, genetic counselors per capita, having a usual source of care) on access to genetic counseling.
  
  
  RESULTS
  Unmet need for genetic counseling increased significantly in 2009-2010 compared to 2001 (odds ratio 1.89; 95% confidence interval [CI] 1.44-2.47). Being older (adjusted odds ratio [aOR] 1.04; 95% CI 1.02-1.06), having severe health limitations (aOR 1.72; 95% CI 1.16-2.58), being uninsured (aOR 3.56; 95% CI 2.16-5.87), and having family financial problems due to health care costs (aOR 1.90; 95% CI 1.52-2.38) were significantly associated with greater unmet need for genetic counseling. Having a usual source of care was associated with decreased unmet need (aOR 0.55; 95% CI 0.37-0.83).
  
  
  CONCLUSIONS
  Unmet need for genetic counseling has increased over the past 12 years. Uninsurance and financial problems related to health care costs were the largest drivers of unmet need over time.
authors.affiliation: Harvard Medical School, Boston, Mass.
authors.forename: Anna Jo
authors.initials: AJ
authors.lastname: Smith
authors.affiliation: Partnership for People With Disabilities, Virginia Commonwealth University, Richmond, Va. Electronic address: doswald@vcu.edu.
authors.forename: Donald
authors.initials: D
authors.lastname: Oswald
authors.affiliation: McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins School of Medicine, Baltimore, Md.
authors.forename: Joann
authors.initials: J
authors.lastname: Bodurtha
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services / Q000706:statistics & numerical data* / Q000600:supply & distribution; D002675:Child, Preschool; D019988:Children with Disabilities; D005260:Female; D005817:Genetic Counseling / Q000706:statistics & numerical data* / Q000600:supply & distribution; D006297:Health Services Accessibility / Q000639:trends*; D006301:Health Services Needs and Demand / Q000639:trends*; D006801:Humans; D007182:Income / Q000706:statistics & numerical data; D007223:Infant; D007231:Infant, Newborn; D007348:Insurance, Health / Q000706:statistics & numerical data; D016014:Linear Models; D016015:Logistic Models; D008297:Male; D011203:Poverty / Q000706:statistics & numerical data; D014481:United States; D000078329:Workforce
keywords: children with special health care needs; genetic counseling; insurance