Optimising general practice support for autistic adults: a realist review protocol

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Birtwell, K., Planner, C., Epton, T., Gowen, E., Corsellis, E., Botha, M., Longley, S., Khan, G., Stratton, C., & Wong, G. (2025). Optimising general practice support for autistic adults: a realist review protocol. Systematic Reviews, 14(1), 184-184. https://doi.org/10.1186/s13643-025-02936-7

Publication date: 29 Sep 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
10
Publication authors identified as autistic
1 / 10 (10.0%)
  1. Kelly Birtwell
  2. Claire Planner
  3. Tracy Epton
  4. Emma Gowen
  5. Emily Corsellis
  1. Monique Botha *
  2. Sophie Longley
  3. Ghafaria Khan
  4. Cathy Stratton
  5. Geoff Wong

Abstract

BACKGROUND: Mental and physical health conditions are more common in autistic than non-autistic people, including anxiety, depression, suicidality, gastrointestinal problems, cancer, epilepsy, and heart disease. General practice is often the first point of contact for patients, yet research has found that autistic people face barriers to healthcare, report lower satisfaction with healthcare, and have more unmet health needs than non-autistic people. This can be due to misunderstandings about the needs of autistic people, different communication styles, the clinic environment, and challenges making and getting to appointments, compounded by slow dissemination of research findings. Our aim is to find out how, why, and to what extent general practice supports autistic adults with and without intellectual disabilities (ID) throughout their lives, in order to suggest improvements to practice. METHODS: We will conduct a realist review which is a theory-driven systematic review. Electronic databases will be searched including MEDLINE, PsycInfo, EMBASE, the Cochrane Database of Systematic Reviews, CINAHL, Scopus, ASSIA and grey literature sources (e.g. Google Scholar). To be included articles must concern general practice, autistic adults aged 18 and over, contain information relevant to a UK setting, and be written in English. Any study design or article type may be included and articles will be assessed for relevance and rigour. In line with realist synthesis methods we will identify relevant contexts, mechanisms and outcomes and develop a programme theory to explain how, why, and when general practice optimally supports (or not) autistic adults. We will also seek to identify resources that are available for and used by general practice to support autistic adults. We will involve stakeholders in each stage of the review including autistic individuals, family members, and healthcare professionals (including general practice staff). The review will be reported in line with the RAMESES publication standards. DISCUSSION: The findings will inform guidance for i) general practice about potentially helpful adaptations to service, and ii) autistic people to help them gain the support they need. This will help to improve access to and engagement with general practice care, and thus potentially improve the health and wellbeing of autistic individuals. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42024545403.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
51
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 51 (11.8%)
Cited author occurrences identified as autistic
10 / 202 (5.0%)
Among occurrences linked to AutiHub author records: 10 / 82 (12.2%). Distinct cited authors identified as autistic: 9 / 182 (4.9%).
Cited author occurrences linked to AutiHub author records
82 / 202 (40.6%)
Distinct linked cited authors: 65 / 182 (35.7%)
Linked cited-author occurrences not identified as autistic
72 / 82 (87.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 72 / 202 (35.6%). Distinct linked cited authors not identified as autistic: 56 / 65 (86.2%).
  2. Steven K. Kapp * , Kristen Gillespie-Lynch , Lauren E. Sherman , Ted Hutman (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0028353 OpenAlex: https://openalex.org/W2124715426
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  3. Trisha Greenhalgh , Richard Peacock (2005). Effectiveness and efficiency of search methods in systematic reviews of complex evidence: audit of primary sources . BMJ, 331(7524), 1064-1065. BMJ.
    Type: Article DOI: 10.1136/bmj.38636.593461.68 OpenAlex: https://openalex.org/W2149364707
    Crossref OpenAlex OpenCitations
  4. Jo Rycroft-Malone , Brendan McCormack , Alison M Hutchinson , Kara DeCorby , Tracey K Bucknall , Bridie Kent et al. (2012). Realist synthesis: illustrating the method for implementation research . Implementation Science, 7(1), 33-33. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1748-5908-7-33 OpenAlex: https://openalex.org/W2097730860
    Crossref OpenAlex OpenCitations
  5. (n.d.). Bonnello, C. Autistic Not Weird Survey, 2018. 2018. http://autisticnotweird.com/2018survey/ Accessed 2 Aug 2022.
    Type: Other
    Crossref
  6. David Moher , Lesley Stewart , Paul Shekelle (2016). Implementing PRISMA-P: recommendations for prospective authors . Systematic Reviews, 5(1), 15-15. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13643-016-0191-y OpenAlex: https://openalex.org/W2272534858
    Crossref OpenAlex OpenCitations
  7. Geoff Wong , Trisha Greenhalgh , Gill Westhorp , Jeanette Buckingham , Ray Pawson (2013). RAMESES publication standards: realist syntheses . BMC Medicine, 11(1), 21-21. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1741-7015-11-21 OpenAlex: https://openalex.org/W2120732572
    Crossref OpenAlex OpenCitations
  8. Yunhe Huang , Samuel R. C. Arnold , Kitty‐Rose Foley , Julian N Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320903128 OpenAlex: https://openalex.org/W3008810253
    Crossref OpenAlex OpenCitations
  9. Cari-lène Mul , Steven D. Stagg , Bruno Herbelin , Jane E. Aspell (2018). The Feeling of Me Feeling for You: Interoception, Alexithymia and Empathy in Autism . Journal of Autism and Developmental Disorders, 48(9), 2953-2967. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3564-3 OpenAlex: https://openalex.org/W2796562389
    Crossref OpenAlex OpenCitations
  10. Tatja Hirvikoski , Ellenor Mittendorfer-Rutz , Marcus Boman , Henrik Larsson , Paul Lichtenstein , Sven Bölte (2016). Premature mortality in autism spectrum disorder . British Journal of Psychiatry, 208(3), 232-238. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  11. Lauren Bishop-Fitzpatrick , Eric Rubenstein (2019). The physical and mental health of middle aged and older adults on the autism spectrum and the impact of intellectual disability . Research in Autism Spectrum Disorders, 63, 34-41. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.01.001 OpenAlex: https://openalex.org/W2913601089
    Crossref OpenAlex OpenCitations
  12. PRISMA-P Group , David Moher , Larissa Shamseer , Mike Clarke , Davina Ghersi , Alessandro Liberati et al. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement . Systematic Reviews, 4(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/2046-4053-4-1 OpenAlex: https://openalex.org/W2161374186
    Crossref OpenAlex OpenCitations
  13. Ami Tint , Hannah Chung , Meng-Chuan Lai , Robert Balogh , Elizabeth Lin , Anna Durbin et al. (2023). Health conditions and service use of autistic women and men: A retrospective population-based case–control study . Autism, 27(6), 1641-1657. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221144353 OpenAlex: https://openalex.org/W4313424008
    Crossref OpenAlex OpenCitations
  14. Geoff Wong (2015). Special Invited Editorial . International Journal of Qualitative Methods, 14(5). SAGE Publications.
    Type: Article DOI: 10.1177/1609406915621428 OpenAlex: https://openalex.org/W2278717040
    Crossref OpenAlex OpenCitations
  15. (n.d.). Harper G, Smith E, Cassidy S, Cooke K, Adams S, Nielsen E, Davidson I. Autistica Action Briefing: Suicide Prevention. Autistica. 2019.
    Type: Other
    Crossref
  16. Miranda Fricker (2007). Epistemic Injustice . Oxford University PressOxford.
    Type: Book DOI: 10.1093/acprof:oso/9780198237907.001.0001 OpenAlex: https://openalex.org/W4252633962
    Crossref OpenAlex OpenCitations
  17. BN Hand (2019). Hand BN, Angell AM, Harris L, Carpenter LA. Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism. 2019;24(3):136236131989079. Autism, 24(3), 136236131989079.
    Type: Other
    Crossref
  18. Daniel Gilmore , Morgan Krantz , Lindy Weaver , Brittany N. Hand (2022). Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis . Autism, 26(2), 317-331. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211060906 OpenAlex: https://openalex.org/W4200018858
    Crossref OpenAlex OpenCitations
  19. Angel M. Chater , Gillian W. Shorter , Vivien Swanson , Atiya Kamal , Tracy Epton , Madelynne A. Arden et al. (2021). Template for Rapid Iterative Consensus of Experts (TRICE) . International Journal of Environmental Research and Public Health, 18(19), 10255. MDPI AG.
    Type: Article DOI: 10.3390/ijerph181910255 OpenAlex: https://openalex.org/W3173434199
    Crossref OpenAlex OpenCitations
  20. Silvana Unigwe , Carole Buckley , Laura Crane , Lorcan Kenny , Anna Remington , Elizabeth Pellicano (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-e452. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgp17x690449 OpenAlex: https://openalex.org/W2614102167
    Crossref OpenAlex OpenCitations
  21. Jonathan A. Weiss , Barry Isaacs , Heidi Diepstra , Andrew S. Wilton , Hilary K. Brown , Caitlin McGarry et al. (2018). Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(1), 36-44. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3292-0 OpenAlex: https://openalex.org/W2754086730
    Crossref OpenAlex OpenCitations
  22. Justin Jagosh (2019). Realist Synthesis for Public Health: Building an Ontologically Deep Understanding of How Programs Work, For Whom, and In Which Contexts . Annual Review of Public Health, 40(1), 361-372. Annual Reviews.
    Type: Article DOI: 10.1146/annurev-publhealth-031816-044451 OpenAlex: https://openalex.org/W2909221634
    Crossref OpenAlex OpenCitations
  23. Samuel Brice , Jacqui Rodgers , Barry Ingham , David Mason , Colin Wilson , Mark Freeston et al. (2021). The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys . BMJ Open, 11(3), e043336. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2020-043336 OpenAlex: https://openalex.org/W3138477195
    Crossref OpenAlex OpenCitations
  24. Anna Wallisch , Brian A. Boyd , Jean P. Hall , Noelle K. Kurth , Carl G. Streed Jr , Abigail Mulcahy et al. (2023). Health Care Disparities Among Autistic LGBTQ+ People . Autism in Adulthood, 5(2), 165-174. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0006 OpenAlex: https://openalex.org/W4321783387
    Crossref OpenAlex OpenCitations
  25. David Mason , Barry Ingham , Anna Urbanowicz , Cos Michael , Heather Birtles , Marc Woodbury‐Smith et al. (2019). A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults . Journal of Autism and Developmental Disorders, 49(8), 3387-3400. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04049-2 OpenAlex: https://openalex.org/W2945521062
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  27. Elizabeth O’Nions , Dan Lewer , Irene Petersen , Jude Brown , Joshua E.J. Buckman , Rebecca A. Charlton et al. (2024). Estimating life expectancy and years of life lost for autistic people in the UK: a matched cohort study . The Lancet Regional Health - Europe, 36, 100776. Elsevier BV.
    Type: Article DOI: 10.1016/j.lanepe.2023.100776 OpenAlex: https://openalex.org/W4388961329
    Crossref OpenAlex OpenCitations
  28. Icek Ajzen (2020). The theory of planned behavior: Frequently asked questions . Human Behavior and Emerging Technologies, 2(4), 314-324. Wiley.
    Type: Article DOI: 10.1002/hbe2.195 OpenAlex: https://openalex.org/W3034582256
    Crossref OpenAlex OpenCitations
  29. Andrew Booth , Judy Wright , Simon Briscoe (2018). Scoping and Searching to Support Realist Approaches . In Doing Realist Research (pp. 147-166). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781526451729.n10 OpenAlex: https://openalex.org/W2921134648
    Crossref OpenAlex OpenCitations
  31. Brad Astbury (2018). Making Claims Using Realist Methods . In Doing Realist Research (pp. 59-78). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781526451729.n5 OpenAlex: https://openalex.org/W2921836097
    Crossref OpenAlex OpenCitations
  32. Gerard McCormack , Alison C. Dillon , Olive Healy , Chloe Walsh , Sinéad Lydon (2020). Primary Care Physicians’ Knowledge of Autism and Evidence-Based Interventions for Autism: A Systematic Review . Review Journal of Autism and Developmental Disorders, 7(3), 226-241. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-019-00189-4 OpenAlex: https://openalex.org/W2993060385
    Crossref OpenAlex OpenCitations
  33. Geoff Wong (2018). Data Gathering in Realist Reviews: Looking for needles in haystacks . In Doing Realist Research (pp. 131-146). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781526451729.n9 OpenAlex: https://openalex.org/W2922054979
    Crossref OpenAlex OpenCitations
  34. Claire Duddy , Geoff Wong , E W Gadsby , Janet Krska , Vivienne Hibberd (2021). NHS Health Check programme: a protocol for a realist review . BMJ Open, 11(4), e048937. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2021-048937 OpenAlex: https://openalex.org/W3155822095
    Crossref OpenAlex OpenCitations
  35. Emma Gowen , Rachel Taylor , Thomas Bleazard , Anat Greenstein , Peter Baimbridge , Daniel Poole (2019). Guidelines for conducting research studies with the autism community. Autism Policy & Practice, 2(1), 29.
    Type: Article OpenAlex: https://openalex.org/W2987130266
    OpenAlex
  36. David Mason , Gavin R. Stewart , Simone Josephine Capp , Francesca Happé (2022). Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go . Autism in Adulthood, 4(2), 164-172. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0041 OpenAlex: https://openalex.org/W4205511195
    Crossref OpenAlex OpenCitations
  37. Charlotte Featherstone , Richard A. Sharpe , Nick Axford , Sheena Asthana , Kerryn Husk (2022). Health and wellbeing outcomes and social prescribing pathways in community‐based support for autistic adults: A systematic mapping review of reviews . Health & Social Care in the Community, 30(3), e621-e635. Wiley.
    Type: Article DOI: 10.1111/hsc.13635 OpenAlex: https://openalex.org/W3209381171
    Crossref OpenAlex OpenCitations
  38. N Chown (2022). Chown N, Shaw S, Doherty M, Johnson M, Krupa J, Martin N, et al. Healthcare barriers, health outcomes, and annual health checks for autistic adults: a cross-sectional study of General Practitioners’ knowledge, attitudes and practices. Canadian J Educ Soc Stud. 2022;2(4):179–99. Canadian J Educ Soc Stud., 2(4), 179.
    Type: Other
    Crossref
  39. Micah Mazurek , Eleonora Sadikova , Nancy Cheak‐Zamora , Amber Hardin , Kristin Sohl , Beth A. Malow (2023). Health Care Needs, Experiences, and Perspectives of Autistic Adults . Autism in Adulthood, 5(1), 51-62. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0069 OpenAlex: https://openalex.org/W4311844611
    Crossref OpenAlex OpenCitations
  41. (n.d.). ‌NHS. The NHS Long Term Plan (Version 1. 2 with corrections, August 2019). NHS. 2019. https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1 . 2.pdf Accessed 6 Feb 2023.
    Type: Other
    Crossref
  42. (n.d.). NHS England. Core20PLUS5 (adults) - an approach to reducing healthcare inequalities. NHS England. 2021. https://www.england.nhs.uk/about/equality/equality-hub/national-healthcare-inequalities-improvement-programme/core20plus5/ Accessed 27 Feb 2023.
    Type: Other
    Crossref
  43. Rebecca Hunter , Trish Gorely , Michelle Beattie , Kevin Harris (2022). Realist review . International Review of Sport and Exercise Psychology, 15(1), 242-265. Informa UK Limited.
    Type: Article DOI: 10.1080/1750984x.2021.1969674 OpenAlex: https://openalex.org/W3205222598
    Crossref OpenAlex OpenCitations
  44. (n.d.). Department of Health & Social Care and Department of Education. National strategy for autistic children, young people and adults: 2021–2026. Department of Health & Social Care and Department of Education. 2021. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026 Accessed 27 Feb 2023.
    Type: Other
    Crossref
  46. (n.d.). Cusack, J. & Sterry, R. Your questions: shaping future autism research. Autistica. www.autistica.org.uk/downloads/files/Autism-Top-10-Your-Priorities-for-Autism-Research.pdf Accessed 11 Aug 2022.
    Type: Other
    Crossref
  47. Emma Gowen (2019). Gowen E, Taylor R, Bleazard T, Greenstein A, Baimbridge P, Poole D. Guidelines for conducting research studies with the autism community. Autism Policy Pract. 2019;2(1):29–45. Autism Policy Pract, 2(1), 29.
    Type: Other
    Crossref
  48. Ray Pawson (2006). Evidence-based Policy . SAGE Publications Ltd.
    Type: Book DOI: 10.4135/9781849209120 OpenAlex: https://openalex.org/W2478759695
    Crossref OpenCitations
  49. David Mason , Gavin R. Stewart , Simone Capp , Francesca Happé (2022). Response to Rose and Michael; doi: 10.1089/aut.2022.0023 . Autism in Adulthood, 4(2), 176-176. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0033 OpenAlex: https://openalex.org/W4280552526
    OpenAlex
  50. J Greenhalgh (2021). Greenhalgh J, Manzano A. Understanding, “context” in realist evaluation and synthesis. Int J Soc Res Method. 2021;25(5):1–14. Int J Soc Res Method, 25(5), 1.
    Type: Other
    Crossref
  51. (n.d.). Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist synthesis: an introduction. RMP Methods Paper 2/2004. 2004, Manchester, UK: ESRC Research Methods Programme, University of Manchester.
    Type: Other
    Crossref