title: Family impacts among children with autism spectrum disorder: the role of health care quality.
abstract: OBJECTIVE
  To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD.
  
  
  METHODS
  Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts.
  
  
  RESULTS
  Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards.
  
  
  CONCLUSIONS
  CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD.
authors: Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore; Division of General Pediatrics, Oregon Health & Science University, Portland, Ore. Electronic address: zuckerma@ohsu.edu.
authors: Katharine E
authors: KE
authors: Zuckerman
authors: Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore; Department of Public Health, Oregon State University, Corvallis, Ore.
authors: Olivia J
authors: OJ
authors: Lindly
authors: Division of General Pediatrics, Oregon Health & Science University, Portland, Ore.
authors: Christina D
authors: CD
authors: Bethell
authors: Center for Child and Adolescent Health Research and Policy, Massachusetts General Hospital for Children, Boston, Mass; Division of General Pediatrics, Department of Pediatrics, Harvard Medical School, Cambridge, Mass.
authors: Karen
authors: K
authors: Kuhlthau
mesh_terms: D000293:Adolescent; D000067877:Autism Spectrum Disorder / Q000191:economics / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D019988:Children with Disabilities / Q000706:statistics & numerical data*; D004651:Employment; D005190:Family; D005260:Female; D006306:Health Surveys; D054625:Healthcare Disparities / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D011787:Quality of Health Care / Q000706:statistics & numerical data*; D012044:Regression Analysis; D012959:Socioeconomic Factors; D014481:United States
keywords: autism spectrum disorder; children with special health care needs; delivery of health care; disabled children; family burden; family health; financial burden; integrated; quality of health care