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

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...

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Main Authors: Jeremy R. Parr, Helen Taylor, Colin Wilson, Clare Scarlett, Sarah Al-Asmori, Carole Buckley, Sally-Ann Cooper, Cristina Fernandez-Garcia, Tracy Finch, Rhianna Lees, Nicholas Lennox, Hannah Merrick, Sebastian Moss, Christina Nicolaidis, Malcolm Osbourne, Dora M. Raymaker, Tomos Robinson, Anna Urbanowicz, James M. S. Wason, Barry Ingham
Format: Article
Language:English
Published: BMC 2024-12-01
Series:Trials
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Online Access:https://doi.org/10.1186/s13063-024-08641-5
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author Jeremy R. Parr
Helen Taylor
Colin Wilson
Clare Scarlett
Sarah Al-Asmori
Carole Buckley
Sally-Ann Cooper
Cristina Fernandez-Garcia
Tracy Finch
Rhianna Lees
Nicholas Lennox
Hannah Merrick
Sebastian Moss
Christina Nicolaidis
Malcolm Osbourne
Dora M. Raymaker
Tomos Robinson
Anna Urbanowicz
James M. S. Wason
Barry Ingham
author_facet Jeremy R. Parr
Helen Taylor
Colin Wilson
Clare Scarlett
Sarah Al-Asmori
Carole Buckley
Sally-Ann Cooper
Cristina Fernandez-Garcia
Tracy Finch
Rhianna Lees
Nicholas Lennox
Hannah Merrick
Sebastian Moss
Christina Nicolaidis
Malcolm Osbourne
Dora M. Raymaker
Tomos Robinson
Anna Urbanowicz
James M. S. Wason
Barry Ingham
author_sort Jeremy R. Parr
collection DOAJ
description 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).
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spelling doaj-art-38c38ac74bb8475c9022b0b322829a5d2025-01-05T12:45:11ZengBMCTrials1745-62152024-12-0125111210.1186/s13063-024-08641-5Health checks for autistic adults: study protocol for a cluster randomised controlled trialJeremy R. Parr0Helen Taylor1Colin Wilson2Clare Scarlett3Sarah Al-Asmori4Carole Buckley5Sally-Ann Cooper6Cristina Fernandez-Garcia7Tracy Finch8Rhianna Lees9Nicholas Lennox10Hannah Merrick11Sebastian Moss12Christina Nicolaidis13Malcolm Osbourne14Dora M. Raymaker15Tomos Robinson16Anna Urbanowicz17James M. S. Wason18Barry Ingham19Population Health Sciences Institute, Newcastle UniversityPopulation Health Sciences Institute, Newcastle UniversityPopulation Health Sciences Institute, Newcastle UniversityNHS North East and North Cumbria Integrated Care BoardPopulation Health Sciences Institute, Newcastle UniversityRoyal College of General PractitionersSchool of Health and Wellbeing, University of GlasgowPopulation Health Sciences Institute, Newcastle UniversityDepartment of Nursing, Midwifery and Health, Northumbria UniversityPopulation Health Sciences Institute, Newcastle UniversityQueensland Centre for Intellectual and Developmental Disability, MRI-UQ, The University of QueenslandPopulation Health Sciences Institute, Newcastle UniversityNHS Northumberland Clinical Commissioning GroupSchool of Social Work, Portland State UniversityThe Kayaks Support GroupRegional Research Institute for Human Sciences, Portland State UniversityPopulation Health Sciences Institute, Newcastle UniversityAustralia Institute for Health Transformation, Determinants of Health, School of Health and Social Development, Faculty of Health, Deakin UniversityPopulation Health Sciences Institute, Newcastle UniversityPopulation Health Sciences Institute, Newcastle UniversityAbstract 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).https://doi.org/10.1186/s13063-024-08641-5AutismInterventionRCTHealth checks
spellingShingle Jeremy R. Parr
Helen Taylor
Colin Wilson
Clare Scarlett
Sarah Al-Asmori
Carole Buckley
Sally-Ann Cooper
Cristina Fernandez-Garcia
Tracy Finch
Rhianna Lees
Nicholas Lennox
Hannah Merrick
Sebastian Moss
Christina Nicolaidis
Malcolm Osbourne
Dora M. Raymaker
Tomos Robinson
Anna Urbanowicz
James M. S. Wason
Barry Ingham
Health checks for autistic adults: study protocol for a cluster randomised controlled trial
Trials
Autism
Intervention
RCT
Health checks
title Health checks for autistic adults: study protocol for a cluster randomised controlled trial
title_full Health checks for autistic adults: study protocol for a cluster randomised controlled trial
title_fullStr Health checks for autistic adults: study protocol for a cluster randomised controlled trial
title_full_unstemmed Health checks for autistic adults: study protocol for a cluster randomised controlled trial
title_short Health checks for autistic adults: study protocol for a cluster randomised controlled trial
title_sort health checks for autistic adults study protocol for a cluster randomised controlled trial
topic Autism
Intervention
RCT
Health checks
url https://doi.org/10.1186/s13063-024-08641-5
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