Health checks for autistic adults: study protocol for a cluster randomised controlled trial

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Parr, J. R., Taylor, H., Wilson, C., Scarlett, C., Al-Ashmori, S., Buckley, C., Cooper, S. A., Fernandez-Garcia, C., Finch, T., Lees, R., Lennox, N., Merrick, H., Moss, S., Nicolaidis, C., Osborne, M., Raymaker, D. M., Robinson, T., Urbanowicz, A., Wason, J. M., & Ingham, B. (2024). Health checks for autistic adults: study protocol for a cluster randomised controlled trial. Trials, 25(1), 858-858. https://doi.org/10.1186/s13063-024-08641-5

Publication date: 31 Dec 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
20
Publication authors identified as autistic
1 / 20 (5.0%)
  1. Jeremy R. Parr
  2. Helen Taylor
  3. Colin Wilson
  4. Clare Scarlett
  5. Sarah Al-Ashmori
  6. Carole Buckley
  7. Sally-Ann Cooper
  1. Cristina Fernandez-Garcia
  2. Tracy Finch
  3. Rhianna Lees
  4. Nicholas Lennox
  5. Hannah Merrick
  6. Sebastian Moss
  7. Christina Nicolaidis
  1. Malcolm Osborne
  2. Dora M. Raymaker *
  3. Tomos Robinson
  4. Anna Urbanowicz
  5. James M.S. Wason
  6. Barry Ingham

Abstract

BACKGROUND: Autistic people commonly have physical and mental health conditions. They also frequently experience barriers to accessing healthcare, contributing to problems identifying and treating health conditions. These factors may lead to increased and earlier morbidity and lower average life expectancy for autistic people. Health checks specifically designed for autistic people, incorporating adjustments to healthcare, may help to overcome these barriers and reduce health inequalities. This trial aims to investigate the clinical and cost-effectiveness of a primary care health check for autistic adults and explore factors related to implementation such as acceptability and feasibility of delivery. The trial is co-designed and delivered by health professionals, autistic people, carers and supporters, and researchers. METHODS: This is a clinical and cost-effectiveness, cluster randomised controlled trial of a primary care health check for autistic adults. Primary care practices will be randomised into one of two groups (intervention or control). Two hundred autistic adults (aged 18 years and over) who provide baseline data will be recruited via participating practices. Data will be collected through quantitative and qualitative methods. The primary outcome will be the incidence of new health needs/conditions detected and met at 9 months (data gathered from participant's GP records). Secondary outcomes will include the following: cost-effectiveness, measured as incremental cost per quality-adjusted life year gained over 9 months; the extent of health monitoring and health promotion needs met at 9 months; the incidence of social care needs identified at 9 months; changes in participant or carer general health; changes in quality of life; primary and secondary health and social care resource usage and costs. A qualitative study will explore views about the acceptability of the health check, its utility and future use. DISCUSSION: This study will examine the effectiveness and cost-effectiveness of a primary care health check for autistic adults in identifying new health conditions and needs. If the intervention is effective, it would provide strong evidence for implementation into routine healthcare, therefore enabling earlier health condition diagnosis and opportunities for treatment, reducing the health inequalities experienced by autistic people. TRIAL REGISTRATION: ISRCTN, retrospectively registered on 20 July 2023. https://www.isrctn.com/ISRCTN30156776 (ISRCTN registration number: 30156776).

Bibliography cited by this reference

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

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 07:54.

Cited references
43
With a DOI
31
Without a DOI, from raw bibliography text
12
7 / 43 (16.3%) cited references include at least one author identified as autistic.
References with data to complete
12 / 43 (27.9%)
References with detected author names
31 / 43 (72.1%)
Without detected author names
12
Without a structured title
12
Without a stable identifier
12
References with raw author names still to review
12
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
237
From DOI or external metadata
237
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
22
105 / 237 (44.3%) names are linked to an author already present in AutiHub. 132 / 237 (55.7%) names are not yet linked.
Names linked to a person identified as autistic
20 / 237 (8.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 20 / 105 (19.0%). Distinct people identified as autistic: 9 / 175 (5.1%).
  1. M. Herdman , C. Gudex , Anthony Lloyd , MF. Janssen , P. Kind , D. Parkin et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) . Quality of Life Research, 20(10), 1727-1736. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11136-011-9903-x OpenAlex: https://openalex.org/W1990166011
    Crossref OpenAlex OpenCitations
  2. Andrew Cashin , Thomas Buckley , Julian Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
    Type: Article DOI: 10.1177/1744629516665242 OpenAlex: https://openalex.org/W2519892621
    Crossref OpenAlex OpenCitations
  3. John Brazier , Jennifer Roberts , Mark Deverill (2002). The estimation of a preference-based measure of health from the SF-36 . Journal of Health Economics, 21(2), 271-292. Elsevier BV.
    Type: Article DOI: 10.1016/s0167-6296(01)00130-8 OpenAlex: https://openalex.org/W2092052931
    Crossref OpenAlex OpenCitations
  4. Paul Dolan (1997). Modeling Valuations for EuroQol Health States . Medical Care, 35(11), 1095-1108. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00005650-199711000-00002 OpenAlex: https://openalex.org/W1994222210
    Crossref OpenAlex OpenCitations
  5. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  6. Nicholas Lennox , Chris Bain , Therese Rey‐Conde , Miriam Taylor , Frances M. Boyle , David M. Purdie et al. (2010). Cluster Randomized‐Controlled Trial of Interventions to Improve Health for Adults with Intellectual Disability Who Live in Private Dwellings . Journal of Applied Research in Intellectual Disabilities, 23(4), 303-311. Wiley.
    Type: Article DOI: 10.1111/j.1468-3148.2009.00533.x OpenAlex: https://openalex.org/W2076362598
    Crossref OpenAlex OpenCitations
  7. 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
  8. M. F. Janssen , A. Simon Pickard , Dominik Golicki , Claire Gudex , Maciej Niewada , Luciana Scalone et al. (2013). Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study . Quality of Life Research, 22(7), 1717-1727. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11136-012-0322-4 OpenAlex: https://openalex.org/W2089165963
    Crossref OpenAlex OpenCitations
  9. Ewelina Rydzewska , Laura A. Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2019). General health of adults with autism spectrum disorders – A whole country population cross-sectional study . Research in Autism Spectrum Disorders, 60(April 2019), 59-66. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.01.004 OpenAlex: https://openalex.org/W2912237256
    Crossref OpenAlex OpenCitations
  11. John H. Ward , Elizabeth Weir , Carrie T. Allison , Simon Baron-Cohen (2023). Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults . Molecular Autism, 14(1), 35. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-023-00565-2 OpenAlex: https://openalex.org/W4386892471
    Crossref OpenAlex OpenCitations
  12. Nicholas Lennox , Lyn McPherson , Chris Bain , Michael O'Callaghan , Suzanne Carrington , Robert S Ware (2016). A health advocacy intervention for adolescents with intellectual disability: a cluster randomized controlled trial . Developmental Medicine & Child Neurology, 58(12), 1265-1272. Wiley.
    Type: Article DOI: 10.1111/dmcn.13174 OpenAlex: https://openalex.org/W2462246544
    Crossref OpenAlex OpenCitations
  15. Sally-Ann Cooper , Jill Morrison , Linda M Allan , Alex McConnachie , Nicola Greenlaw , Craig A Melville et al. (2014). Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial . The Lancet Psychiatry, 1(7), 511-521. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(14)00078-9 OpenAlex: https://openalex.org/W2106906578
    Crossref OpenAlex OpenCitations
  16. Matthew J. Maenner , Leann E. Smith , Jinkuk Hong , Renee Makuch , Jan S. Greenberg , Marsha R. Mailick (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities . Disability and Health Journal, 6(1), 8-17. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2012.08.005 OpenAlex: https://openalex.org/W2137821998
    Crossref OpenAlex OpenCitations
  17. 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
  19. Andrea Manca , Neil Hawkins , Mark J. Sculpher (2005). Estimating mean QALYs in trial‐based cost‐effectiveness analysis: the importance of controlling for baseline utility . Health Economics, 14(5), 487-496. Wiley.
    Type: Article DOI: 10.1002/hec.944 OpenAlex: https://openalex.org/W2118249259
    Crossref OpenAlex OpenCitations
  20. Youssra Saqr , Erika Braun , Kyle Porter , Debra Barnette , Christopher Hanks (2018). Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting . Autism, 22(1), 51-61. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317709970 OpenAlex: https://openalex.org/W2740604847
    Crossref OpenAlex OpenCitations
  21. Carl R May , Frances Mair , Tracy Finch , Anne MacFarlane , Christopher Dowrick , Shaun Treweek et al. (2009). Development of a theory of implementation and integration: Normalization Process Theory . Implementation Science, 4(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1748-5908-4-29 OpenAlex: https://openalex.org/W2124199620
    Crossref OpenAlex OpenCitations
  23. Mairead Murphy , Sandra Hollinghurst , Sean Cowlishaw , Chris Salisbury (2018). Primary Care Outcomes Questionnaire: psychometric testing of a new instrument . British Journal of General Practice, 68(671), e433-e440. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgp18x695765 OpenAlex: https://openalex.org/W2789283800
    Crossref OpenAlex OpenCitations
  24. Nicholas Lennox , Christopher Bain , Therese Rey-Conde , David Purdie , Robert Bush , Nirmala Pandeya (2007). Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial . International Journal of Epidemiology, 36(1), 139-146. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/ije/dyl254 OpenAlex: https://openalex.org/W2124727073
    Crossref OpenAlex OpenCitations
  26. Elizabeth Murray , Shaun Treweek , Catherine Pope , Anne MacFarlane , Luciana Ballini , Christopher Dowrick et al. (2010). Normalisation process theory: a framework for developing, evaluating and implementing complex interventions . BMC Medicine, 8(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1741-7015-8-63 OpenAlex: https://openalex.org/W2144185507
    Crossref OpenAlex OpenCitations
  27. DAVID S. MANDELL , Lindsay J Lawer , Kira Branch , Edward S. Brodkin , Kristin Healey , Robert Witalec et al. (2012). Prevalence and correlates of autism in a state psychiatric hospital . Autism, 16(6), 557-567. SAGE Publications.
    Type: Article DOI: 10.1177/1362361311412058 OpenAlex: https://openalex.org/W2152175389
    Crossref OpenAlex OpenCitations
  28. Natasha Kennedy , Jonathan Kennedy , Mike Kerr , Sam Dredge , Sinead Brophy (2022). Health checks for adults with intellectual disability and association with survival rates: a linked electronic records matched cohort study in Wales, UK . BMJ Open, 12(4), e049441. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2021-049441 OpenAlex: https://openalex.org/W4223922674
    Crossref OpenAlex OpenCitations
  29. Lisa R. J. Kang , Tim Barlott , Merrill Turpin , Anna Urbanowicz (2022). A trial of the AASPIRE healthcare toolkit with Australian adults on the autism spectrum . Australian Journal of Primary Health, 28(4), 350-356. CSIRO Publishing.
    Type: Article DOI: 10.1071/py21134 OpenAlex: https://openalex.org/W4280553371
    Crossref OpenAlex OpenCitations
  30. (n.d.). Department of Health and Social Care and Department for Education. National strategy for autistic children, young people and adults: 2021 to 2026. London, UK. 2021.
    Type: Other
    Crossref
  31. (n.d.). NHS England. 2022/23 National Cost Collection data. Leeds: NHS England; 2023. https://www.england.nhs.uk/costing-in-the-nhs/national-cost-collection/ .
    Type: Other
    Crossref
  33. (n.d.). Sealed Envelope. https://www.sealedenvelope.com .
    Type: Other
    Crossref
  34. (n.d.). National Health Service England. E-learning for Healthcare. https://www.e-lfh.org.uk/ .
    Type: Other
    Crossref
  35. (n.d.). Qualtrics. Qualtrics. Utah: Provo; 2005.
    Type: Other
    Crossref
  36. (n.d.). Constantino JN, Gruber CP. Social Responsiveness Scale – Second Edition (SRS-2). Torrance, CA: Western Psychological Services; 2012.
    Type: Other
    Crossref
  37. Karen C. Jones , Helen Weatherly , Sarah Birch , Adriana Castelli , Martin Chalkley , Alan Dargan et al. (2024). Unit Costs of Health and Social Care 2023 Manual . Personal Social Services Research Unit (University of Kent) & Centre for Health Economics (University of York).
    Type: Book DOI: 10.22024/unikent/01.02.105685 OpenAlex: https://openalex.org/W6926458537
    OpenAlex
  38. (n.d.). National Institute for Health and Care Excellence. NICE health technology evaluations: the manual. 2022.
    Type: Other
    Crossref
  39. (n.d.). Ware J KM, Bjorner J, Turner-Bowker D, Gandek B, Maruish M. User’s manual for the SF-36v2 Health Survey. Lincoln (RI): Quality Metric Incorporated; 2007.
    Type: Other
    Crossref
  40. (n.d.). National Institute for Health and Care Excellence. Position statement on use of the EQ-5D-5L value set for England. 2019.
    Type: Other
    Crossref
  41. (n.d.). Jones KC, Weatherly H, Birch S, Castelli A, Chalkley M, Dargan A, et al. Unit costs of health and social care 2022 manual. 2023.
    Type: Other
    Crossref
  42. (n.d.). Joint Formulary Committee. British national formulary (BNF) 2024.
    Type: Other
    Crossref
  43. (n.d.). National Health Service. The NHS long term plan (section 3. 31). 2019. https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan . Accessed 30 May 2022.
    Type: Other
    Crossref