Specialist Autism Team provision for autistic adults without learning disabilities: a mixed methods investigation and evaluation The SHAPE project

Bryony Beresford, Suzanne Mukherjee, Emese Mayhew, Emily Heavey, A-La Park, Lucy Stuttard, Victoria Allgar, Martin Knapp

Research output: Book/ReportOther report

Abstract

Background: NICE recommends every locality has a ‘Specialist Autism Team’ (SAT): an autism-specialist, community-based, multi-disciplinary service responsible for developing, coordinating and delivering care and support. It recommended this novel delivery model was evaluated. 
Objective(s):•identify services fulfilling NICE’s description of a SAT;•describe practitioner and user experiences;•investigate outcomes;•identify factors associated with outcomes;•estimate costs and investigate cost-effectiveness.
Design Stage 1: •desk-based research and survey to identify SATs.
Stage 2: •mixed methods observational study of cohort of SAT users, followed for up to two years from assessment appointment. Users either referred for ‘diagnosis and support’ (D&S) or, if already diagnosed, ‘support only’ (SO))•nested qualitative study of senior practitioners. •exploratory comparison of D&S group with a cohort accessing a diagnostic assessment service (‘diagnosis only’ (DO)). 
Setting (Stage 2): Nine SATs; three also provided a regional diagnostic assessment service (used to recruit DO cohort). 
Participants (Stage 2):•SAT cohort: n 252 (D&S =164, SO=88). •DO cohort: n=56. Thirty-seven participants (across both cohorts) recruited to the qualitative evaluation and eleven practitioners to the nested qualitative study. 
Main outcome measures:• WHOQOL-BREF Psychological Domain, GHQ-12.
Data sources Self-reported outcomes, qualitative interviews with users, and focus groups with practitioners.
Results:Stage 1 Eighteen SATs were identified, all for autistic adults without LD. Services varied in their characteristics. Resources available, commissioner specifications and clinical opinion determined service design. Stage 2: Staff reported increasing referral rates without commensurate increases in funding. They called for an expansion of SATs’ consultation/supervision function and resource for low-intensity, on-going support. For the SAT cohort, there was evidence of prevention of deterioration in outcomes and positive benefit for the D&S group. Users of services with more professions involved were likely to experience better outcomes; however, this may not be considered cost-effective. Some service characteristics were not associated with outcomes, suggesting different structural/organisational models are acceptable. Findings suggests one-to-one work for mental health problems was cost-effective and an episodic approach to delivering care plans more cost-effective than managed care. Qualitative findings generally align with quantitative findings; however, users consistently connected a managed-care approach to supporting improvement in outcomes.For the DO cohort, no changes in mental health outcomes at T3 were observed. Interviews, comparing D&S and DO individuals, suggests extended psycho education post-diagnosis impacts immediate and longer-term adjustment. 
Limitation:  Sample size prohibited investigating association between some service characteristics and outcomes. Comparison of DO cohort and D&S group underpowered. Economic evaluation limited by incomplete costs data.
Conclusions: The study provides first evidence on the implementation of SATs. There is some evidence of benefit for this model of care. Service characteristics that may affect outcomes, costs and cost-effectiveness were identified. Finding suggest extended psycho education post-diagnosis is a critical element of SAT provision. 
Future work We recommend:•comparative evaluation of SATs vs diagnostic-only provision •evaluation of models of providing consultation/supervision and low-intensity support.

Original languageEnglish
PublisherUniversity of York
Commissioning bodyNIHR Health Services and Delivery Research
Publication statusAccepted/In press - Feb 2020

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    Beresford, B., Mukherjee, S., Mayhew, E., Heavey, E., Park, A-L., Stuttard, L., Allgar, V., & Knapp, M. (Accepted/In press). Specialist Autism Team provision for autistic adults without learning disabilities: a mixed methods investigation and evaluation The SHAPE project . University of York.