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 journalArticlepeer-review

36 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
Externally publishedYes


  • 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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