Healthcare Barriers, Health Outcomes, and Annual Health Checks for Autistic Adults: A Cross-Sectional Study of General Practitioners’ Knowledge, Attitudes and Practices
DOI:
https://doi.org/10.53103/cjess.v2i4.57Keywords:
Annual Health Checks, General Practitioners, Health Outcomes, Healthcare BarriersAbstract
Various physical conditions appear with greater frequency in autistic individuals in comparison to non-autistic people and can lead to higher morbidity, lower quality of life, and lower life expectancy. A voluntary primary care annual health check (AHC) scheme is in place in the UK for patients with intellectual disabilities (ID), some of whom will also be autistic. We report the results of a study involving an online questionnaire disseminated via Twitter to investigate knowledge, attitudes, and practices of UK General Practitioners (GPs) concerning barriers and enablers to autistic adults accessing primary healthcare services. Amongst other matters, we found that (1) autistic people who are independent for the most part face the greatest struggles accessing primary healthcare, and (2) advocates of AHCs for autistic adults face the twin challenges of convincing extremely busy GPs to prioritise AHCs, and of advocacy on behalf of people with other conditions.
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Atherton, G., Lummis, B., Day, S. X., & Cross, L. (2019). What am I thinking? Perspective-taking from the perspective of adolescents with autism. Autism, 23(5), 1186-1200. https://doi.org/10.1177%2F1362361318793409
Beane, A., Padeniya, A., De Silva, A. P., Stephens, T., De Alwis, S., Mahipala, P. G., ... & Haniffa, R. (2017). Closing the theory to practice gap for newly qualified doctors: evaluation of a peer-delivered practical skills training course for newly qualified doctors in preparation for clinical practice. Postgraduate Medical Journal, 93(1104), 592-596. http://dx.doi.org/10.1136/postgradmedj-2016-134718
Beardon, L. (2017). Autism and asperger syndrome in adults. London: Sheldon Press.
Beardon, L. (2022). Avoiding anxiety in autistic adults: A guide for autistic wellbeing. London: Sheldon Press.
Bilder, D., Botts, E. L., Smith, K. R., Pimentel, R., Farley, M., Viskochil, J., . . . Coon, H. (2013). Excess mortality and causes of death in autism spectrum disorders: A follow up of the 1980s Utah/UCLA autism epidemiologic study. Journal of Autism and Developmental Disorders, 43(5), 1196–1204. https://doi.org/10.1007/s10803-012-1664-z
Buszewicz, M., Welch, C., Horsfall, L., Nazareth, I., Osborn, D., Hassiotis, A., ... & Strydom, A. (2014). Assessment of an incentivised scheme to provide annual health checks in primary care for adults with intellectual disability: Alongitudinal cohort study. The Lancet Psychiatry, 1(7), 522-530. https://doi.org/10.1016/S2215-0366(14)00079-0
Carey, I. M., Hosking, F., Harris, T., De Wilde, S., Beighton, C., & Cook, D. G. (2017). An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database. Health Services and Delivery Research, 5(25). https://doi.org/10.3310/hsdr05250
Casanova, M. F., Frye, R. E., Gillberg, C., & Casanova, E. L. (2020). Comorbidity and autism spectrum disorder. Frontiers in Psychiatry, 11, 1273. https://doi.org/10.3389/fpsyt.2020.617395
Chauhan, U., Courtenay, K., & Hoghton, M. (2020). Physical health in people with intellectual disabilities. Oxford Textbook of the Psychiatry of Intellectual Disability, 203.
Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., ... & MacGregor, D. (2017). Improving research about us, with us: A draft framework for inclusive autism research. Disability & Society, 32(5), 720-734.
Christensen, J. H., Elsborg, P., Melby, P. S., Nielsen, G., & Bentsen, P. (2021). A scoping review of peer-led physical activity interventions involving young people: Theoretical approaches, intervention rationales, and effects. Youth & Society, 53(5), 811-840. https://doi.org/10.1177/0044118X20901735
Clouder, L., Karakus, M., Cinotti, A., Ferreyra, M. V., Fierros, G. A., & Rojo, P. (2020). Neurodiversity in higher education: A narrative synthesis. Higher Education, 80(4), 757-778. https://doi.org/10.1007/s10734-020-00513-6
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814–823. https://doi.org/10.1177/1362361315577517
Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704-1712. https://doi.org/10.1177/1362361320919286
Department of Health. (2014). Think autism: An update to the government adult autism strategy.
Diaz, A., Baweja, R., Bonatakis, J. K., & Baweja, R. (2021). Global health disparities in vulnerable populations of psychiatric patients during the COVID-19 pandemic. World Journal of Psychiatry, 11(4), 94. doi: 10.5498/wjp.v11.i4.94
Disability Rights Commission. (2006). Equal treatment: Closing the gap. health formal investigation report. London: Disability Rights Commission. URL: www.leeds.ac.uk/disability-studies/archiveuk/DRC/Health%20FI%20main.pdf.
Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. British Medical Journal Open, 12, e056904
Emerson, E., Baines, S., Allerton, L., & Welch, V. (2017). Health inequalities and people with learning disabilities in the UK, Improving Health and Lives Learning Disabilities Observatory.
Fiene, L., Ireland, M. J., & Brownlow, C. (2018). The Interoception Sensory Questionnaire (ISQ): A scale to measure interoceptive challenges in adults. Journal of Autism and Developmental Disorders, 48(10), 3354-3366. https://doi.org/10.1007/s10803-018-3600-3
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232-238. https://doi.org/10.1192/bjp.bp.114.160192
HMSO. (1995) Disability Discrimination Act. Retrieved on 11 December 2021 from http://www.legislation.hmso.gov.uk/
Loiacono, E. T., & Ren, H. (2018). Building a Neurodiverse High-tech Workforce. MIS Quarterly Executive, 17(4).
Maddams, J., & Pearson, D. (2013). Annual health checks for people with learning disability. InnovAiT, 6(3), 133-139. https://doi.org/10.1177/1755738013477551
Mazurek, M. O., Sadikova, E., Cheak-Zamora, N., Hardin, A., Huerta, I., Sohl, K., & Malow, B. A. (2021). They deserve the “same level of care that any other person deserves”: Caregiver perspectives on healthcare for adults on the autism spectrum. Research in Autism Spectrum Disorders, 89, 101862. https://doi.org/10.1016/j.rasd.2021.101862
Michael, J. (2008). Healthcare for all. Report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_099255
Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008
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, 19(7), 824–831. https://doi.org/10.1177/1362361315576221
Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2014). The impact of health checks for people with intellectual disabilities: an updated systematic review of evidence. Research in Developmental Disabilities, 35(10), 2450-2462. https://doi.org/10.1016/j.ridd.2014.06.007
Robertson, J., Roberts, H., & Emerson, E. (2010). Health checks for people with learning disabilities: A systematic review of evidence. Stockton-on-Tees: Improving Health and Lives: Learning Disabilities Observatory.
Rydzewska E, Hughes-McCormack LA, Gillberg C, et al. (2019). General health of adults with autism spectrum disorders – a whole country population cross-sectional study. Res Autism Spectr Disord, 60, 59–66. https://doi.org/10.1016/j.rasd.2019.01.004
Sala, R., Amet, L., Blagojevic-Stokic, N., Shattock, P., & Whiteley, P. (2020). Bridging the gap between physical health and autism spectrum disorder. Neuropsychiatric Disease and Treatment, 16, 1605. 10.2147/NDT.S251394
Sharpe, R. A., Curry, W., Brown, R., & Shankar, R. (2019). A public health approach to reducing health inequalities among adults with autism. British Journal of General Practice, 69 (688), 534-535. https://doi.org/10.3399/bjgp19X706133
Sockalingam, S., Rajaratnam, T., Zhou, C., Serhal, E., Crawford, A., & Mylopoulos, M. (2021). Building mental health capacity: Exploring the role of adaptive expertise in the ECHO Virtual Learning Model. Journal of Continuing Education in the Health Professions, 41(2), 104-110. doi: 10.1097/CEH.0000000000000349
Stigmar, M. (2016). Peer-to-peer teaching in higher education: A critical literature review. Mentoring & Tutoring: Partnership in Learning, 24(2), 124-136. https://doi.org/10.1080/13611267.2016.1178963
Stokes, J., Gellatly, J., Bower, P., Meacock, R., Cotterill, S., Sutton, M., & Wilson, P. (2019). Implementing a national diabetes prevention programme in England: lessons learned. BMC Health Services Research, 19(1), 1-12. https://doi.org/10.1186/s12913-019-4809-3
Unigwe S, Buckley C, Crane L, Kenny L, Remington A, Pellicano E. (2017). GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study. British Journal of General Practice. 67(659), e445-52. https://doi.org/10.3399/bjgp17X690449
Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency department use among adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 46(4), 1441–1454. https://doi.org/10.1007/s10803-015-2692-2
Walmsley, J., Price, G., & Hoghton, M. (2011). GPs should take annual health checks for people with learning difficulties seriously. British Medical Journal, 343. https://doi.org/10.1136/bmj.d5220
Walsh, C., Lydon, S., O’Dowd, E., & O’Connor, P. (2020). Barriers to healthcare for persons with autism: A systematic review of the literature and development of a taxonomy. Developmental Neurorehabilitation, 23(7), 413-430. https://doi.org/10.1080/17518423.2020.1716868
Warner, G., Parr, J. R., & Cusack, J. (2019). Workshop report: Establishing priority research areas to improve the physical health and well-being of autistic adults and older people. Autism in Adulthood, 1(1), 20-26. https://doi.org/10.1089/aut.2018.0003
Whelan, M. E., Carlin, L., Musson, H., & Adams, E. J. (2021). Mixed methods process evaluation of a national peer-led training program to increase brief advice on physical activity given by health care professionals. Journal of Physical Activity and Health, 1(aop), 1-11. https://doi.org/10.1123/jpah.2021-0188
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Copyright (c) 2022 Nick Chown, Sebastian C K Shaw, Mary Doherty, Mona Johnson, Joanna Krupa, Nicki Martin, Molly Brooker-Corcoran
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