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

Abstract

ObjectivesWaiting 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.DesignWe 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.ResultsBased 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.ConclusionsThis 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 numberNCT04422483.

An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory

“…Only a few studies in the autism or neurodevelopmental field have applied complex interventions or realist-style methods to understand the challenges in this area. Analogous research ( 31 ), based on realist literature review methods, and based in the UK, has identified similar findings on key aspects of autism support in health. These key areas were (1) initial recognition; (2) referral and triaging; (3) diagnostic modelling; (4) providing feedback to parents; (5) working in partnership with families; (6) interagency working; (6) and training, service evaluation and development ( 31 ).…”

Community paediatricians’ experience of joint working with child and adolescent mental health services: findings from a British national survey

“…Additional strategies can be gained from studying and adapting successful models of collaborative working in other jurisdictions. However, it is important to address other crucial underlying and long-standing macro-level factors such as funding and staffing constraints in both paediatric and CAMHS services 60. With supportive strategic policies, enabling commissioning structures and keenness of front-line clinicians, the UK can achieve the goal of closer integration of paediatric and CAMHS services.…”

Perspective Chapter: Rethinking Autism Assessment, Diagnosis, and Intervention within a Neurodevelopmental Pathway Framework

“…Care pathways are applied internationally as a way of planning and delivering individualised support to specified groups of people through multidisciplinary team working [30]. Within the last decade, evidence has become available to inform standards and practice in pathways for assessment and diagnosis of autism in children and adults [8,9,31].…”

“…From the historical point when autism began being diagnosed [6], the singlecondition approach has been positive in raising the profile and need for autism assessment. It has led to the development of accessible and focussed, evidence-based clinical guidelines [7]; together with evidence about what leads to effective and efficient pathways [8] and accessibility of professional learning frameworks and resources to help multi-disciplinary teams develop shared and specialist skills and to learn from experiences of those waiting for and taking part in assessment [9].…”