TY - JOUR
T1 - Family impacts among children with autism spectrum disorder
T2 - The role of health care quality
AU - Zuckerman, Katharine E.
AU - Lindly, Olivia J.
AU - Bethell, Christina D.
AU - Kuhlthau, Karen
N1 - Funding Information:
Supported in part by National Institute of Mental Health Mentored Career Development Award K23MH095828 (Dr Zuckerman), the Nancy Lurie Marks Foundation (Dr Kuhlthau), and Cooperative Agreement 1-U59-MC06980-01 from the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (Dr Bethell). The authors thank Julie Robertson, MPH, MSW, for assistance with data analysis.
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
KW - autism spectrum disorder
KW - children with special health care needs
KW - delivery of health care
KW - disabled children
KW - family burden
KW - family health
KW - financial burden
KW - integrated
KW - quality of health care
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U2 - 10.1016/j.acap.2014.03.011
DO - 10.1016/j.acap.2014.03.011
M3 - Article
C2 - 24976352
AN - SCOPUS:84903558083
SN - 1876-2859
VL - 14
SP - 398
EP - 407
JO - Academic Pediatrics
JF - Academic Pediatrics
IS - 4
ER -