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

Academic Pediatrics

Volumn 14, Issue 4, 2014, Pages 398-407

  Zuckerman, Katharine E ^a   Lindly, Olivia J ^a,b   Bethell, Christina D ^a   Kuhlthau, Karen ^c,d  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^b OREGON STATE UNIVERSITY   (United States)

^c MASSACHUSETTS GENERAL HOSPITAL   (United States)

^d HARVARD MEDICAL SCHOOL   (United States)

Author 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

Indexed keywords

ADOLESCENT; ARTICLE; AUTISM; CHILD; CHILD HEALTH; CONTROLLED STUDY; EMPLOYMENT; FAMILY; FEMALE; HEALTH CARE NEED; HEALTH CARE QUALITY; HUMAN; MAJOR CLINICAL STUDY; MALE; SENSITIVITY ANALYSIS; UNITED STATES; AUTISM SPECTRUM DISORDER; COMPARATIVE STUDY; COST OF ILLNESS; ECONOMICS; HANDICAPPED CHILD; HEALTH CARE DISPARITY; HEALTH SURVEY; PRESCHOOL CHILD; REGRESSION ANALYSIS; SOCIOECONOMICS; STATISTICS AND NUMERICAL DATA;

ADOLESCENT; AUTISM SPECTRUM DISORDER; CHILD; CHILD, PRESCHOOL; COST OF ILLNESS; DISABLED CHILDREN; EMPLOYMENT; FAMILY; FEMALE; HEALTH SURVEYS; HEALTHCARE DISPARITIES; HUMANS; MALE; QUALITY OF HEALTH CARE; REGRESSION ANALYSIS; SOCIOECONOMIC FACTORS; UNITED STATES;

EID: 84903558083     PISSN: 18762859     EISSN: 18762867     Source Type: Journal    
DOI: 10.1016/j.acap.2014.03.011     Document Type: Article

References (38)

1. S.J. Blumberg, M.D. Bramlett, and M.D. Kogan et al. Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011-2012 Natl Health Stat Report 65 2013 1 7
2. 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 61 SS03 2012 1 19
3. M.A. Almansour, M.A. Alateeq, and M.K. Alzahrani et al. Depression and anxiety among parents and caregivers of autistic spectrum disorder children Neurosciences (Riyadh) 18 2013 58 63
4. D.M. Sikora, P. Vora, D.L. Coury, and D. Rosenberg Attention-deficit/ hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder Pediatrics 130 suppl 2 2012 S91 S97
5. J.G. Gurney, M.L. McPheeters, and M.M. Davis Parental report of health conditions and health care use among children with and without autism Arch Pediatr Adolesc Med 160 2006 825 830
6. A.E. Brachlow, K.K. Ness, M.L. McPheeters, and J.G. Gurney Comparison of indicators for primary care medical home between children with autism or asthma and other special health care needs Arch Pediatr Adolesc Med 161 2007 399 405
7. K.A. Kuhlthau, R. Kahn, and K.S. Hill et al. The well-being of parental caregivers of children with activity limitations Matern Child Health J 14 2010 155 163
8. K.E. Heck, and D.M. Makue Parental employment and health insurance coverage among school-aged children with special health care needs Am J Public Health 90 2000 1856 1860
9. K. Kuhlthau, K.S. Hill, R. Yucel, and J.M. Perrin Financial burden for families of children with special health care needs Matern Child Health J 9 2005 207 218
10. A.J. Houtrow, and M.J. Okumura Pediatric mental health problems and associated burden on families Vulnerable Child Youth Stud 6 2011 222 233
11. H. Allik, J.O. Larsson, and H. Smedje Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism Health Qual Life Outcomes 4 2006 1
12. J. Bromley, D.J. Hare, K. Davison, and E. Emerson Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services Autism 8 2004 409 423
13. C.S. Duarte, I.A. Bordin, L. Yazigi, and J. Mooney Factors associated with stress in mothers of children with autism Autism 9 2005 416 427
14. M.D. Kogan, B.B. Strickland, and S.J. Blumberg 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 122 2008 e1149 e1158
15. G. Montes, and J.S. Halterman Child care problems and employment among families with preschool-aged children with autism in the United States Pediatrics 112 2008 e202 e208
16. I. Hertz-Picciotto, and L. Delwiche The rise in autism and the role of age at diagnosis Epidemiology 20 2009 84 90
17. A. Wazana, M. Bresnahan, and J. Kline The autism epidemic: fact or artifact? J Am Acad Child Adolesc Psychiatry 46 2007 721 730
18. P.T. Shattuck The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education Pediatrics 117 2006 1028 1037
19. R.M. Ghandour, A.H. Hirai, and S.J. Blumberg et al. Financial and non-financial burden among families of CSHCN: changes between 2001 and 2009/10 Acad Pediatr 14 2014 92 100
20. J.D. Lollar, M.S. Hartzell, and M.A. Evans Functional difficulties and health conditions among children with special health needs Pediatrics 129 2012 e714 e722
21. S.L. Boulet, C.A. Boyle, and L.A. Schieve Health care use and health and functional impact of developmental disabilities among US children, 1997-2005 Arch Pediatr Adolesc Med 163 2009 19 26
22. A.J. Davidoff Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance Pediatrics 114 2004 394 403
23. A.A. Galbraith, S.T. Wong, S.E. Kim, and P.W. Newacheck Out-of-pocket financial burden for low-income families with children: socioeconomic disparities and effects of insurance Health Serv Res 40 6 pt 1 2005 1722 1736
24. A.J. Houtrow, M.J. Okumura, J.F. Hilton, and R.S. Rehm Profiling health and health-related services for children with special health care needs with and without disabilities Acad Pediatr 11 2011 508 516
25. 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.
26. M. McPherson, P. Arango, and H. Fox et al. A new definition of children with special health care needs Pediatrics 102 1998 137 140
27. C.D. Bethell, D. Read, and R. Stein et al. Identifying children with special health care needs: development and evaluation of a short screening tool Ambul Pediatr 2 2002 38 48
28. M.D. Bramlett, D. Read, C. Bethell, and S.J. Blumberg Differentiating subgroups of children with special health care needs by health status and complexity of health care needs Matern Child Health J 13 2009 151 163
29. 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.
30. K.D. Gadow, C. DeVincent, and J. Scheider Predictors of psychiatric symptoms in children with an autism spectrum disorder J Autism Dev Disord 38 2008 1710 1720
31. C. Knapp, L. Woodworth, and D. Fernandez-Baca et al. Factors associated with a patient-centered medical home among children with behavioral health conditions Matern Child Health J 17 2013 1658 1664
32. P.S. Carbone, D.D. Behl, V. Azor, and N.A. Murphy The medical home for children with autism spectrum disorders: parent and pediatrician perspectives J Autism Dev Disord 40 2009 317 324
33. K.C. Thomas, S.L. Parish, R.A. Rose, and M. Kilany Access to care for children with autism in the context of state Medicaid reimbursement Matern Child Health J 16 2012 1636 1644
34. L.M. Wegner, and M.M. Macias Services for children and adolescents with autism spectrum disorders: payment issues Pediatr Ann 38 2009 57 61
35. 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.
36. J.L. Taylor, and M.M. Seltzer Employment and post-secondary education activities for young adults with autism spectrum disorders during the transition to adulthood J Autism Dev Disord 41 2011 566 574
37. M.A. Maglione, D. Gans, L. Das Technical Expert Panel, and HRSA Autism Intervention Research - Behavioral (AIR-B) Network Nonmedical interventions for children with ASD: recommended guidelines and further research needs Pediatrics 130 suppl 2 2012 S169 S178
38. R.E. Glasgow, R.M. Kaplan, and J.K. Ockene et al. Patient-reported measures of psychosocial issues and health behavior should be added to electronic health records Health Aff 31 2012 497 504