Brief Report: Factors Influencing Healthcare Satisfaction in Adults with Autism Spectrum Disorder
The current study investigated healthcare satisfaction and factors related to satisfaction in 92 adults with Autism Spectrum Disorder (ASD). Participants or their caregiver completed a survey about their experiences with primary care and specialty physicians. Respondents reported a high level of satisfaction with their healthcare. The only factor significantly associated with satisfaction was age, with participants under age 26 reporting significantly higher levels of satisfaction than participants above age 26. Participants under age 26 also were significantly more likely to live at home, have private health insurance, and have others making their healthcare decisions than participants above age 26. Results indicate that healthcare satisfaction can be high for adults with ASD that have good family and community support.
KeywordsASD Autism Adult Healthcare Satisfaction
Portions of these results were presented at the 2016 International Meeting for Autism Research. The authors wish to thank all of the study participants, Dr. Beth Jerskey, Ph.D., and Brittany Dunn, B.S., for their help with data collection, and Dr. Henry Sachs, M.D., for his overall support of the study.
AHG participated in the study design, collected study data, and drafted the manuscript; CM participated in the statistical analysis and interpretation of the data, and helped draft the manuscript; TL participated in the design and coordination of the study and helped draft the manuscript; EMM participated in the design of the study and supervised the study; TA conceived of the study, participated in its design and coordination and contributed to the writing of the manuscript; SJS participated in the design and coordination of the study, supervised the study, and helped to draft the manuscript. All authors read and approved the final manuscript.
This study was supported by grants from the Rhode Island Foundation and the Simons Autism Foundation Research Initiative (SFARI # 286756).
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- Baio, J. (2014). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveillance Summaries, 63(SS02), 1–21.Google Scholar
- Bastiaansen, J. A., Meffert, H., Hein, S., Huizinga, P., Ketelaars, C., Pijnenborg, M., & de Bildt, A. (2011). Diagnosing autism spectrum disorders in adults: the use of autism diagnostic observation schedule (ADOS) module 4. Journal of Autism and Developmental Disorders, 41(9), 1256–1266. doi: 10.1007/s10803-010-1157-x.CrossRefPubMedGoogle Scholar
- Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., Constantino, J. N., & Yeargin-Allsopp, M. (2016). Prevalence and Characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65(No. SS-3), 1–23. doi: 10.15585/mmwr.ss6503a1.CrossRefGoogle Scholar
- de Bildt, A., Sytema, S., Meffert, H., & Bastiaansen, J. A. C. J. (2016). The autism diagnostic observation schedule, module 4: Application of the revised algorithms in an independent, well-defined, dutch sample (n = 93). Journal of Autism and Developmental Disorders, 46, 21–30. doi: 10.1007/s10803-015-2532-4.CrossRefPubMedGoogle Scholar
- Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375–387. doi: 10.1177/1362361309105658.CrossRefGoogle Scholar
- Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. doi: 10.1016/j.jbi.2008.08.010.CrossRefPubMedGoogle Scholar
- Jones, K. B., Cottle, K., Bakian, A., Farley, M., Bilder, D., Coon, H., & McMahon, W. M. (2015). A description of medical conditions in adults with autism spectrum disorder: A follow-up of the 1980s Utah/UCLA autism epidemiologic study. Autism: The International Journal of Research and Practice. doi: 10.1177/1362361315594798.Google Scholar
- Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 1–15. doi: 10.1007/s10803-016-2722-8.
- Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20(4), 245–252. doi: 10.1016/j.pedhc.2005.12.008.CrossRefPubMedGoogle Scholar
- Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism Diagnostic Observation Schedule, Second Edition Manual. Los Angeles, CA: Western Psychological Services.Google Scholar
- Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28(6), 761–769. doi: 10.1007/s11606-012-2262-7.CrossRefPubMedGoogle Scholar
- Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice. doi: 10.1177/1362361315576221.Google Scholar
- Pugliese, C. E., Kenworthy, L., Bal, V. H., Wallace, G. L., Yerys, B. E., Maddox, B. B., & Anthony, L. G. (2015). Replication and comparison of the newly proposed ADOS-2, module 4 algorithm in ASD without ID: A multi-site study. Journal of Autism and Developmental Disorders, 45(12), 3919–3931. doi: 10.1007/s10803-015-2586-3.CrossRefPubMedPubMedCentralGoogle Scholar
- Sappok, T., Diefenbacher, A., Budczies, J., Schade, C., Grubich, C., Bergmann, T., & Dziobek, I. (2013). Diagnosing autism in a clinical sample of adults with intellectual disabilities: how useful are the ADOS and the ADI-R? Resesearch on Developmental Disabilities, 34(5), 1642–1655. doi: 10.1016/j.ridd.2013.01.028.CrossRefGoogle Scholar
- Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178. doi: 10.1007/s10803-009-0844-y.CrossRefPubMedGoogle Scholar
- Sparrow, S., Balla, D., & Cicchetti, D. (2005). Vineland Adaptive Behavior Scales (2nd edn). Shoreview, MN: American Guidance Service.Google Scholar
- Tyler, C. V., Schramm, S. C., Karafa, M., Tang, A. S., & Jain, A. K. (2011). Chronic disease risks in young adults with autism spectrum disorder: forewarned is forearmed. American Journal on Intellectual and Developmental Disabilities, 116(5), 371–380. doi: 10.1352/1944-7558-116.5.371.CrossRefPubMedGoogle Scholar
- Warfield, M. E., Crossman, M. K., Delahaye, J., Der Weerd, E., & Kuhlthau, K. A. (2015). Physician perspectives on providing primary medical care to adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45(7), 2209–2217. doi: 10.1007/s10803-015-2386-9.CrossRefPubMedGoogle Scholar
- Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176–189. doi: 10.1007/s10803-015-2561-z.CrossRefPubMedPubMedCentralGoogle Scholar
- Zablotsky, B., Kalb, L. G., Freedman, B., Vasa, R., & Stuart, E. A. (2014). Health care experiences and perceived financial impact among families of children with an autism spectrum disorder. Psychiatric Services, 65(3), 395–398. doi: 10.1176/appi.ps.201200552.CrossRefPubMedPubMedCentralGoogle Scholar