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Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality

      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

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      References

        • Blumberg S.J.
        • Bramlett M.D.
        • Kogan M.D.
        • et al.
        Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011–2012.
        Natl Health Stat Report. 2013; 65: 1-7
        • Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators
        • Centers for Disease Control and Prevention
        Prevalence of autism spectrum disorders—Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008.
        MMWR Surveillence Summ. 2012; 61: 1-19
        • Almansour M.A.
        • Alateeq M.A.
        • Alzahrani M.K.
        • et al.
        Depression and anxiety among parents and caregivers of autistic spectrum disorder children.
        Neurosciences (Riyadh). 2013; 18: 58-63
        • Sikora D.M.
        • Vora P.
        • Coury D.L.
        • Rosenberg D.
        Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder.
        Pediatrics. 2012; 130: S91-S97
        • Gurney J.G.
        • McPheeters M.L.
        • Davis M.M.
        Parental report of health conditions and health care use among children with and without autism.
        Arch Pediatr Adolesc Med. 2006; 160: 825-830
        • Brachlow A.E.
        • Ness K.K.
        • McPheeters M.L.
        • Gurney J.G.
        Comparison of indicators for primary care medical home between children with autism or asthma and other special health care needs.
        Arch Pediatr Adolesc Med. 2007; 161: 399-405
        • Kuhlthau K.A.
        • Kahn R.
        • Hill K.S.
        • et al.
        The well-being of parental caregivers of children with activity limitations.
        Matern Child Health J. 2010; 14: 155-163
        • Heck K.E.
        • Makue D.M.
        Parental employment and health insurance coverage among school-aged children with special health care needs.
        Am J Public Health. 2000; 90: 1856-1860
        • Kuhlthau K.
        • Hill K.S.
        • Yucel R.
        • Perrin J.M.
        Financial burden for families of children with special health care needs.
        Matern Child Health J. 2005; 9: 207-218
        • Houtrow A.J.
        • Okumura M.J.
        Pediatric mental health problems and associated burden on families.
        Vulnerable Child Youth Stud. 2011; 6: 222-233
        • Allik H.
        • Larsson J.O.
        • Smedje H.
        Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism.
        Health Qual Life Outcomes. 2006; 4: 1
        • Bromley J.
        • Hare D.J.
        • Davison K.
        • Emerson E.
        Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services.
        Autism. 2004; 8: 409-423
        • Duarte C.S.
        • Bordin I.A.
        • Yazigi L.
        • Mooney J.
        Factors associated with stress in mothers of children with autism.
        Autism. 2005; 9: 416-427
        • Kogan M.D.
        • Strickland B.B.
        • Blumberg S.J.
        • et al.
        A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006.
        Pediatrics. 2008; 122: e1149-e1158
        • Montes G.
        • Halterman J.S.
        Child care problems and employment among families with preschool-aged children with autism in the United States.
        Pediatrics. 2008; 112: e202-e208
        • Hertz-Picciotto I.
        • Delwiche L.
        The rise in autism and the role of age at diagnosis.
        Epidemiology. 2009; 20: 84-90
        • Wazana A.
        • Bresnahan M.
        • Kline J.
        The autism epidemic: fact or artifact?.
        J Am Acad Child Adolesc Psychiatry. 2007; 46: 721-730
        • Shattuck P.T.
        The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education.
        Pediatrics. 2006; 117: 1028-1037
        • Ghandour R.M.
        • Hirai A.H.
        • Blumberg S.J.
        • et al.
        Financial and non-financial burden among families of CSHCN: changes between 2001 and 2009/10.
        Acad Pediatr. 2014; 14: 92-100
        • Lollar J.D.
        • Hartzell M.S.
        • Evans M.A.
        Functional difficulties and health conditions among children with special health needs.
        Pediatrics. 2012; 129: e714-e722
        • Boulet S.L.
        • Boyle C.A.
        • Schieve L.A.
        Health care use and health and functional impact of developmental disabilities among US children, 1997–2005.
        Arch Pediatr Adolesc Med. 2009; 163: 19-26
        • Davidoff A.J.
        Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance.
        Pediatrics. 2004; 114: 394-403
        • Galbraith A.A.
        • Wong S.T.
        • Kim S.E.
        • Newacheck P.W.
        Out-of-pocket financial burden for low-income families with children: socioeconomic disparities and effects of insurance.
        Health Serv Res. 2005; 40: 1722-1736
        • Houtrow A.J.
        • Okumura M.J.
        • Hilton J.F.
        • Rehm R.S.
        Profiling health and health-related services for children with special health care needs with and without disabilities.
        Acad Pediatr. 2011; 11: 508-516
      1. Centers for Disease Control and Prevention; National Center for Health Statistics; State and Local Area Integrated Telephone Survey. 2009–2010 National Survey of Children With Special Health Care Needs frequently asked questions. December 2011. Available at: http://www.cdc.gov/nchs/slaits/cshcn.htm. Accessed April 15, 2014.

        • McPherson M.
        • Arango P.
        • Fox H.
        • et al.
        A new definition of children with special health care needs.
        Pediatrics. 1998; 102: 137-140
        • Bethell C.D.
        • Read D.
        • Stein R.
        • et al.
        Identifying children with special health care needs: development and evaluation of a short screening tool.
        Ambul Pediatr. 2002; 2: 38-48
        • Bramlett M.D.
        • Read D.
        • Bethell C.
        • Blumberg S.J.
        Differentiating subgroups of children with special health care needs by health status and complexity of health care needs.
        Matern Child Health J. 2009; 13: 151-163
      2. United States Department of Health and Human Services; Healthy People 2020. Maternal, infant, and child health: overview. Available at: http://healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=26. Accessed April 13, 2013.

        • Gadow K.D.
        • DeVincent C.
        • Scheider J.
        Predictors of psychiatric symptoms in children with an autism spectrum disorder.
        J Autism Dev Disord. 2008; 38: 1710-1720
        • Knapp C.
        • Woodworth L.
        • Fernandez-Baca D.
        • et al.
        Factors associated with a patient-centered medical home among children with behavioral health conditions.
        Matern Child Health J. 2013; 17: 1658-1664
        • Carbone P.S.
        • Behl D.D.
        • Azor V.
        • Murphy N.A.
        The medical home for children with autism spectrum disorders: parent and pediatrician perspectives.
        J Autism Dev Disord. 2009; 40: 317-324
        • Thomas K.C.
        • Parish S.L.
        • Rose R.A.
        • Kilany M.
        Access to care for children with autism in the context of state Medicaid reimbursement.
        Matern Child Health J. 2012; 16: 1636-1644
        • Wegner L.M.
        • Macias M.M.
        Services for children and adolescents with autism spectrum disorders: payment issues.
        Pediatr Ann. 2009; 38: 57-61
      3. Association of Maternal and Child Health Programs. The Affordable Care Act and children and youth with autism spectrum disorder and other developmental disabilities. Issue brief. May 2012. Available at: http://www.amchp.org/programsandtopics/CYSHCN/resources/Documents/ACA_AutismFactSheet_5-3-12.pdf. Accessed April 15, 2014.

        • Taylor J.L.
        • Seltzer M.M.
        Employment and post-secondary education activities for young adults with autism spectrum disorders during the transition to adulthood.
        J Autism Dev Disord. 2011; 41: 566-574
        • Maglione M.A.
        • Gans D.
        • Das L.
        • Technical Expert Panel
        • HRSA Autism Intervention Research—Behavioral (AIR-B) Network
        • et al.
        Nonmedical interventions for children with ASD: recommended guidelines and further research needs.
        Pediatrics. 2012; 130: S169-S178
        • Glasgow R.E.
        • Kaplan R.M.
        • Ockene J.K.
        • et al.
        Patient-reported measures of psychosocial issues and health behavior should be added to electronic health records.
        Health Aff. 2012; 31: 497-504