Family impacts among children with autism spectrum disorder: The role of health care quality

Katharine E. Zuckerman, Olivia J. Lindly, Christina D. Bethell, Karen Kuhlthau

Research output: Contribution to journalArticle

24 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)398-407
Number of pages10
JournalAcademic Pediatrics
Issue number4
StatePublished - 2014


  • 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

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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