Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review

Objectives Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including ‘grey’ literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances...

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Main Authors: Patricia M Wilson, Venkat Reddy, Ian Male, William Farr, Jeremy Parr, Vanessa Abrahamson, Wenjing Zhang, Anna Peckham
Format: Article
Language:English
Published: BMJ Publishing Group 2021-12-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/11/12/e051241.full
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author Patricia M Wilson
Venkat Reddy
Ian Male
William Farr
Jeremy Parr
Vanessa Abrahamson
Wenjing Zhang
Anna Peckham
author_facet Patricia M Wilson
Venkat Reddy
Ian Male
William Farr
Jeremy Parr
Vanessa Abrahamson
Wenjing Zhang
Anna Peckham
author_sort Patricia M Wilson
collection DOAJ
description Objectives Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including ‘grey’ literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis.Design We performed a Rapid Realist Review consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (January 2011–December 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process.Results Based on 45 relevant articles, we identified 7 programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; interagency working; and training, service evaluation and development.Conclusions This theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services.Trial registration number NCT04422483.
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spelling doaj-art-04a7b5eaa0cb4cd4ac66ab6637d430df2025-08-20T02:22:06ZengBMJ Publishing GroupBMJ Open2044-60552021-12-01111210.1136/bmjopen-2021-051241Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist reviewPatricia M Wilson0Venkat Reddy1Ian Male2William Farr3Jeremy Parr4Vanessa Abrahamson5Wenjing Zhang6Anna Peckham7Centre for Health Service Studies, University of Kent, Canterbury, UK5 Cambridgeshire and Peterborough NHS Foundation Trust, Peterborough, UK3 Sussex Community NHS Foundation Trust, West Sussex, UKPaediatrics, Brighton and Sussex Medical School, Brighton, UKNewcastle upon Tyne Hospitals NHS Foundation Trust, Great North Children`s Hospital, Newcastle Upon Tyne, UKCentre for Health Service Studies, University of Kent, Canterbury, UKDepartment of Obstetrics and Gynecology, Qilu Hospital, Cheeloo College of Medicine, Shandong University, Jinan, Shandong, P. R. ChinaCentre for Health Service Studies, University of Kent, Canterbury, UKObjectives Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including ‘grey’ literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis.Design We performed a Rapid Realist Review consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (January 2011–December 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process.Results Based on 45 relevant articles, we identified 7 programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; interagency working; and training, service evaluation and development.Conclusions This theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services.Trial registration number NCT04422483.https://bmjopen.bmj.com/content/11/12/e051241.full
spellingShingle Patricia M Wilson
Venkat Reddy
Ian Male
William Farr
Jeremy Parr
Vanessa Abrahamson
Wenjing Zhang
Anna Peckham
Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
BMJ Open
title Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
title_full Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
title_fullStr Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
title_full_unstemmed Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
title_short Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review
title_sort realist evaluation of autism service delivery re asced which diagnostic pathways work best for whom and in what context findings from a rapid realist review
url https://bmjopen.bmj.com/content/11/12/e051241.full
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