Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality |
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| Affiliation: | 1. Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore;2. Division of General Pediatrics, Oregon Health & Science University, Portland, Ore;3. Department of Public Health, Oregon State University, Corvallis, Ore;4. Center for Child and Adolescent Health Research and Policy, Massachusetts General Hospital for Children, Boston, Mass;5. Division of General Pediatrics, Department of Pediatrics, Harvard Medical School, Cambridge, Mass;1. College of Public Health, Temple University, 1700 N. Broad St., Suite 313, Philadelphia, PA 19122, USA;2. Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities, Temple University, 1700 N. Broad St., Suite 304, Philadelphia, PA 19122, USA;3. Bureau of Supports for Autism and Special Populations, Pennsylvania Department of Human Services, 801 Market St., Philadelphia, PA 19107, USA;4. Policy and Analytics Center, A.J. Drexel Autism Institute, Drexel University, 3020 Market Street, Suite 560, Philadelphia, PA 19104, USA;1. Johns Hopkins University School of Medicine, Baltimore, Md;2. Bronx-Lebanon Hospital Center, Bronx, NY;3. Drexel University Medical School, Philadelphia, Pa;4. Indiana University School of Medicine, Indianapolis, Ind;1. Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Md;2. Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Md;3. Children''s Health Services Research, Indiana University School of Medicine, Indianapolis, Ind;4. Assembly Member, California Legislature, Sacramento, Calif;1. Center for Translational Science, Children''s National Medical Center, Washington, DC;2. Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Md;1. Division of General Pediatrics, Center for Child and Adolescent Health Research and Policy, Boston, Mass;2. MassGeneral Hospital for Children, Boston, Mass |
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| Abstract: | ObjectiveTo 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.MethodsData 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.ResultsAcross 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.ConclusionsCSHCN + 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. |
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| Keywords: | autism spectrum disorder children with special health care needs delivery of health care integrated disabled children family burden family health financial burden quality of health care |
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