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Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

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Abstract

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

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References

  • American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians, Transitions Clinical Report Authoring Group. (2011). Clinical report—Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182–200.

    Article  Google Scholar 

  • Autism Speaks Inc. (2013). What is the ATN? http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn. Accessed 20 July 2013.

  • Aylott, J. (2010). Improving access to health and social care for people with autism. Nursing Standard, 24(27), 47–56.

    Article  PubMed  Google Scholar 

  • Barr, M. (2006). The advanced medical home: A patient-centered, physician-guided model of health care. Philadelphia, PA: American College of Physicians.

    Google Scholar 

  • Boyatzis, R. E. (1989). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, CA: Sage Publications Inc.

    Google Scholar 

  • Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in U.S. children, 1997–2008. Pediatrics, 127(6), 1034–1042.

    Article  PubMed  Google Scholar 

  • Brown, R., Graham, C. L., Richeson, N., Wu, J., & McDermott, S. (2010). Evaluation of medical student performance on objective structured clinical exams with standardized patients with and without disabilities. Academic Medicine, 85(11), 1766–1771.

    Article  PubMed  Google Scholar 

  • Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42, 2498–2504.

    Article  PubMed  Google Scholar 

  • Campbell, S. M., McDonald, R., & Lester, H. (2008). The experience of pay for performance in English family practice: A qualitative study. The Annals of Family Medicine, 6, 228–234.

    Article  Google Scholar 

  • Canitano, R., Luchetti, A., & Zappella, M. (2005). Epilepsy, electroencephalographic abnormalities, and regression in children with autism. Journal of Child Neurology, 20(1), 27–31.

    Article  PubMed  Google Scholar 

  • Cooley, W. C. (2013). Adolescent health care transition in transition. JAMA Pediatrics, 167(10), 897–899.

    Article  PubMed  Google Scholar 

  • Ganz, M. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatric and Adolescent Medicine, 161(4), 343–349.

    Article  Google Scholar 

  • Ghaziuddin, M., Ghaziuddin, N., & Greden, J. (2002). Depression in persons with autism: Implications for research and clinical care. Journal of Autism and Developmental Disorders, 32(4), 299–306.

    Article  PubMed  Google Scholar 

  • Gottschalk, A., & Flocke, S. A. (2005). Time spent in face-to-face patient care and work outside the examination room. The Annals of Family Medicine, 3, 488–493.

    Article  Google Scholar 

  • Graham, C. L., Brown, R. S., Zhen, H., & McDermott, S. (2009). Teaching medical students about disability in family medicine. Family Medicine, 41(8), 542–544.

    PubMed  Google Scholar 

  • Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National survey of children’s health. Archives of Pediatric & Adolescent Medicine, 160(8), 825–830.

    Article  Google Scholar 

  • Iezzoni, L. I. (2011). Eliminating health and health care disparities among the growing population of people with disabilities. Health Affairs, 20(10), 1947–1954.

    Article  Google Scholar 

  • Karl, R., McGuigan, D., Withiam-Leitch, M. L., Akl, E. A., & Symons, A. B. (2013). Reflective impressions of a precepted clinical experience caring for people with disabilities. Intellectual and Developmental Disabilities, 51(4), 237–245.

    Article  PubMed  Google Scholar 

  • Lam, W. Y., Gunukula, S. K., McGuigan, D., Isaiah, N., Symons, A. B., & Akl, E. A. (2010). Validated instruments used to measure attitudes of healthcare students and professionals towards patients with physical disability: A systematic review. Journal of Neuroengineering and Rehabilitation, 7, 55–61.

    Article  PubMed Central  PubMed  Google Scholar 

  • Landon, B. E., Schneider, E. C., & Normand, S. T. (2007). Quality of care in Medicaid managed care and commercial health plans. Journal of the American Medical Association, 298, 1674–1681.

    Article  PubMed  Google Scholar 

  • Long-Bellil, L., Robey, K. L., Graham, C. L., Minihan, P. M., Smeltzer, S., & Kahn, P. (2011). Teaching medical students about disability: The use of standardized patients. Academic Medicine, 86(9), 1163–1170.

    Article  PubMed  Google Scholar 

  • Lotstein, D. S., Inkelas, M., Hays, R. D., Halfon, N., & Brook, R. (2008). Access to care for youth with special health care needs in the transition to adulthood. Journal of Adolescent Health, 43(1), 23–29.

    Article  PubMed  Google Scholar 

  • Lotstein, D. S., Kuo, A. A., Strickland, B., & Tait, F. (2010). The transition to adult health care for youth with special health care needs: Do racial and ethnic disparities exist? Pediatrics, 126, S129–S136.

    Article  PubMed  Google Scholar 

  • Mandell, D. S. (2013). Adults with autism: A new minority. Journal of General Internal Medicine, 28(6), 751–752.

    Article  PubMed Central  PubMed  Google Scholar 

  • McDonald, R., Harrison, S., Checkland, K., & Campbell, S. M. (2007). Impact of financial incentives on clinical autonomy and internal motivation in primary care: Ethnographic study. BMJ, 334, 1357–1359.

    Article  PubMed Central  PubMed  Google Scholar 

  • McDougle, C. J. (2013). Sounding a wake-up call: Improving the lives of adults with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 52(6), 566–568.

    Article  PubMed  Google Scholar 

  • McManus, M. A., Pollack, L. R., Cooley, W. C., McAllister, J. W., Lotstein, D., Strickland, B., & Mann, M. Y. (2013). Current status of transition preparation among youth with special needs in the United States. Pediatrics, 131(6), 1090–1097.

    Article  PubMed  Google Scholar 

  • Molloy, C. A., & Manning-Courtney, P. (2003). Prevalence of chronic gastrointestinal symptoms in children with autism and autistic spectrum disorders. Autism., 7(2), 165–171.

    Article  PubMed  Google Scholar 

  • Moroz, A., Gonzalez-Ramos, G., Festinger, T., Langer, K., Zefferinoi, S., & Kalet, A. (2010). Immediate and follow-up effects of a brief disability curriculum on disability knowledge and attitudes of PM&R residents: A comparison group trial. Medical Teacher, 32, e360–e364.

    Article  PubMed  Google Scholar 

  • National Council on Disability. (2009). The current state of health care for people with disabilities. Washington, DC: National Council on Disability.

    Google Scholar 

  • Okumura, M. J., Heisler, M., Davis, M. M., Cabana, M. D., Demonner, S., & Kerr, E. A. (2008). Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. Journal of General Internal Medicine, 23(10), 1621–1627.

    Article  PubMed Central  PubMed  Google Scholar 

  • Patel, M. S., & O’Hare, K. (2010). Residency training in transition of youth with childhood-onset chronic disease. Pediatrics, 126(Supplement 3), 190–193.

    Article  Google Scholar 

  • Peter, N. G., Forke, C. M., Ginsburg, K. R., & Schwarz, D. F. (2009). Transition from pediatric to adult care: Internists’ perspectives. Pediatrics, 123(2), 417–423.

    Article  PubMed  Google Scholar 

  • Piven, J., & Rabins, P. (2011). Autism spectrum disorders in older adults: Toward defining a research agenda. Journal of the American Geriatrics Society, 59(11), 2151–2155.

    Article  PubMed  Google Scholar 

  • Ritchie, J., & Lewis, J. (Eds.). (2003). Qualitative research practice: A guide for social science students and researchers. London: Sage.

    Google Scholar 

  • Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. Burgess (Eds.), Analyzing qualitative data (pp. 173–194). London: Routledge.

    Chapter  Google Scholar 

  • Rosenthal, T. C. (2008). The medical home: Growing evidence to support a new approach to primary care. Journal of the American Board of Family Medicine, 21(5), 427–440.

    Article  PubMed  Google Scholar 

  • Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric and Adolescent Medicine, 165(2), 141–146.

    Article  Google Scholar 

  • Shea, V., & Mesibov, G. B. (2005). Adolescents and adults with autism. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders, vol 1: Diagnosis, development, neurobiology, and behavior (3rd ed., pp. 288–311). Hoboken: Wiley.

    Google Scholar 

  • Smith, J., & Firth, J. (2011). Qualitative data analysis: The framework approach. Nurse Researcher, 18(2), 52–62.

    Article  PubMed  Google Scholar 

  • Snyder, L., & Neubauer, R. L. (2007). Pay-for-performance principles that promote patient-centered care: An ethics manifesto. The Annals of Internal Medicine, 147, 792–794.

    Article  Google Scholar 

  • Symons, A. B., Fish, R., McGuigan, D., Fox, J., & Akl, E. A. (2012). Development of an instrument to measure medical students’ attitudes toward people with disabilities. Intellectual and Developmental Disabilities, 50(3), 251–260.

    Article  PubMed  Google Scholar 

  • Symons, A. B., McGuigan, D., & Akl, E. A. (2009). A curriculum to teach medical students to care for people with disabilities: Development and initial implementation. BMC Medical Education, 9, 78–84.

    Article  PubMed Central  PubMed  Google Scholar 

  • Wilkinson, J., Dreyfus, D., Cerreto, M., & Bokhour, B. (2012). ‘‘Sometimes I feel overwhelmed’’: Educational needs of family physicians caring for people with intellectual disability. Intellectual and Developmental Disabilities, 50(3), 243–250.

    Article  PubMed Central  PubMed  Google Scholar 

  • Williams, D. (2003). Exposure anxiety—The invisible cage: An exploration of self-protection responses in the autism spectrum and beyond. London: Jessica Kingsley Publishers.

    Google Scholar 

  • Yin, R. K. (2009). Case study research: Design and methods (4th ed.). Thousand Oaks, CA: Sage.

    Google Scholar 

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Acknowledgments

This project was supported with funding from a Grant, R40 MC 19925 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program. We thank the providers who participated in the study.

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Correspondence to Marji Erickson Warfield.

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Warfield, M.E., Crossman, M.K., Delahaye, J. et al. Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD). J Autism Dev Disord 45, 2209–2217 (2015). https://doi.org/10.1007/s10803-015-2386-9

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  • DOI: https://doi.org/10.1007/s10803-015-2386-9

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