The SHAPE project: Supporting adults with High-functioning Autism and asPerger syndromE. Mapping and evaluating Specialist Autism Team service models

TY - JOUR

T1 - The SHAPE project: Supporting adults with High-functioning Autism and asPerger syndromE. Mapping and evaluating Specialist Autism Team service models

AU - Beresford, Bryony Anne

AU - Mukherjee, Suzanne Kathleen Mary

AU - Mayhew, Emese Tunde

AU - Heavey, Emily

AU - Park, A-La

AU - Stuttard, Lucy

AU - Allgar, Victoria Louise

AU - Knapp, Martin

PY - 2020/12/11

Y1 - 2020/12/11

N2 - BACKGR0UNDNICE recommends each 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. OBJECTIVES• 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.DESIGNStage 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 measuresWHOQOL-BREF Psychological Domain, GHQ-12.Data sources Self-reported outcomes, qualitative interviews with users, and focus groups with practitioners.RESULTSStage 1Eighteen 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 psychoeducation post-diagnosis impacts immediate and longer-term adjustment. LIMITATIONSSample size prohibited investigating association between some service characteristics and outcomes. Comparison of DO cohort and D&S group under-powered. Economic evaluation limited by incomplete costs data.CONCLUSIONSThe study provides first evidence on the implementation of SATs. There is some evidence of benefit for this model of care. Service characteristics which may affect outcomes, costs and cost-effectiveness were identified. Finding suggest extended psychoeducation post-diagnosis is a critical element of SAT provision. FUTURE WORKWe recommend:• comparative evaluation of SATs vs diagnostic-only provision • evaluation of models of providing consultation/supervision and low-intensity support.

AB - BACKGR0UNDNICE recommends each 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. OBJECTIVES• 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.DESIGNStage 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 measuresWHOQOL-BREF Psychological Domain, GHQ-12.Data sources Self-reported outcomes, qualitative interviews with users, and focus groups with practitioners.RESULTSStage 1Eighteen 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 psychoeducation post-diagnosis impacts immediate and longer-term adjustment. LIMITATIONSSample size prohibited investigating association between some service characteristics and outcomes. Comparison of DO cohort and D&S group under-powered. Economic evaluation limited by incomplete costs data.CONCLUSIONSThe study provides first evidence on the implementation of SATs. There is some evidence of benefit for this model of care. Service characteristics which may affect outcomes, costs and cost-effectiveness were identified. Finding suggest extended psychoeducation post-diagnosis is a critical element of SAT provision. FUTURE WORKWe recommend:• comparative evaluation of SATs vs diagnostic-only provision • evaluation of models of providing consultation/supervision and low-intensity support.

M3 - Article

SN - 2050-4349

VL - 8

SP - 1

JO - Health Services and Delivery Research

JF - Health Services and Delivery Research

IS - 48

ER -