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Comparative Study
. 2014 Jul-Aug;14(4):398-407.
doi: 10.1016/j.acap.2014.03.011.

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

Katharine E Zuckerman  1 , Olivia J Lindly  2 , Christina D Bethell  3 , Karen Kuhlthau  4
Affiliations
Comparative Study

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

Katharine E Zuckerman et al. Acad Pediatr. 2014 Jul-Aug.

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.

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.

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Figures

Figure 1
Figure 1
Weighted Percentages and 95% Confidence Intervals of Adverse Family Impacts Among US CSHCN Age 3 to 17 Years by ASD and Functional Limitations Status
Figure 2
Figure 2
Weighted Percentages and 95% Confidence Intervals of Health Care Quality Indicators Met Among US CSHCN Age 3 to 17 Years by ASD and Functional Limitations Status
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