Department of Health Reviews Facility To support national policy development and implementation Preventative co-ordinated low-level support for adults with high-functioning autism Systematic review and service mapping Theo Lorenc, Mark Rodgers, Rebecca Rees, October 2016 Kath Wright, Hollie Melton, Amanda Sowden The Department of Health Reviews Facility is a collaboration between the following centres of excellence The authors of this review are: Theo Lorenc1, Mark Rodgers1, Rebecca Rees2, Kath Wright1, Hollie Melton1, Amanda Sowden1 1Centre for Reviews and Dissemination, University of York 2Evidence for Policy and Practice Information and Co-ordinating Centre (EPPI-Centre), Social Science Research Unit, UCL Institute of Education, University College London Acknowledgements We would like to thank the project Advisory Group (see Appendix 6) for their guidance and comments. We would also like to thank Ian Ensum from Bristol Autism Spectrum Service (BASS), Wendy Cork from Leeds Autism Advocacy, Information and Mentoring (AIM), and Mandy Shrimpton from Worcester Rainbow Autism for contributing information about their local services. Claire Khouja, David Marshall and James Thomas assisted in the preparation of the report. This report is based on independent research commissioned and funded by the Department of Health Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the Department of Health. Conflicts of interest There were no conflicts of interest for review team members in the writing of this report. This report should be cited as: Lorenc T, Rodgers M, Rees R, Wright K, Melton H, Sowden A (2016) Preventative co- ordinated low-level support for adults with high-functioning autism: systematic review and service mapping. London: EPPI-Centre, Social Science Research Unit, UCL Institute of Education, University College London. ISBN: 978-1-907345-95-1 © Copyright Authors of the systematic reviews on the EPPI-Centre website (http://eppi.ioe.ac.uk/) hold the copyright for the text of their reviews. The EPPI-Centre owns the copyright for all material on the website it has developed, including the contents of the databases, manuals, and keywording and data-extraction systems. The centre and authors give permission for users of the site to display and print the contents of the site for their own non-commercial use, providing that the materials are not modified, copyright and other proprietary notices contained in the materials are retained, and the source of the material is cited clearly following the citation details provided. Otherwise users are not permitted to duplicate, reproduce, re-publish, distribute, or store material from this website without express written permission. i Contents Abbreviations iv Executive summary 1 1. Background 8 1.1 Policy background 8 1.2 Overview of the project 9 1.3 Advisory Group 9 2. Methods 10 2.1 Review question 10 2.2 Searching 10 2.3 Screening 10 2.4 Quality assessment and data extraction 12 2.5 Approach to synthesis 13 3. Findings 15 3.1 Results of searching 15 3.2 Results 18 3.3 Satisfaction and feasibility data 43 4. Conclusions 45 4.1 Summary of findings (effectiveness and cost-effectiveness) 45 4.2 Strengths and weaknesses of the evidence base 45 4.3 Strengths and weaknesses of the review 47 5. Overview of aims and components of existing support services 49 5.1 Methods 50 5.2 Results of the service mapping 52 5.3 Illustrative case studies 56 5.4 Strengths and limitations of the service mapping 67 5.5 Discussion 68 6. Overall synthesis, research recommendations and conclusions 72 6.1 Comparison of service mapping and systematic review: programme content 72 6.2 Reasons for the evidence-practice discrepancy 74 6.3 Research recommendations 75 6.4 Conclusions 77 7. References 79 Appendices 84 ii Appendix 1: Example search strategy 84 Appendix 2: Quality Assessment tool for effectiveness studies 87 Appendix 3: Quality Assessment tool for economic studies 89 Appendix 4: Quality Assessment tool for qualitative studies 91 Appendix 5: Quality Assessment of economic studies: results 93 Appendix 6: Advisory Group members 94 Appendix 7: Summary table of outcomes 95 Appendix 8: Evidence tables 98 Appendix 9: Aims and components of supportive services for adults with HFA 164 Appendix 10: Cross tabulation of services and components identified from service mapping exercise 186 iii Abbreviations AIF Autism Innovation Fund AIM Advocacy, Information and Mentoring BASS Bristol Autism Spectrum Service BME black and minority ethnic CAB Citizens Advice Bureau CBT cognitive-behavioural therapy CCG Clinical Commissioning Group CI confidence interval CPA Care Plan Approach DH Department of Health DWP Department for Work and Pensions FACS Fair Access to Care Services HFA high-functioning autism IAPT Improving Access to Psychological Therapies ICER incremental cost-effectiveness ratio IPR Index of Peer Relations IQ intelligence quotient LA local authority NAO National Audit Office NHS National Health Service NICE National Institute for Health and Care Excellence nRCT non-randomised controlled trial OQ Outcome Questionnaire QA quality assessment QALY quality-adjusted life-year RCT randomised controlled trial SAE Self-Assessment Exercise SPSI Social Problem Solving Inventory SRS Social Responsiveness Scale SSRS Social Skills Rating System VR virtual reality 1-G one-group study iv v Executive summary Background People with autism spectrum disorders without learning disability (‘high-functioning’ autism or HFA), and their families, have a range of different needs, many of which could be addressed by personalised support. The Autism Strategy for England recommends that local authorities and other policy bodies take a pro-active approach to providing preventive ‘low-level’ support for adults with HFA. This may include practical assistance with daily life; social, emotional and vocational support; strengthening social networks, education or training; and facilitating access to services. However, we know little about the effectiveness or cost-effectiveness of these types of supportive interventions for people with HFA or the kinds of services currently available in England. We need to understand which supportive services have been rigorously evaluated, which are likely to be effective (and cost-effective), and how this evidence fits into the broader practice landscape. Therefore, we carried out: i) a systematic review of the international research evidence on the effectiveness and cost-effectiveness of “low-level support services” for adults with HFA ii) an overview of existing support services for adults with HFA in England Systematic review: question and methods What is known about the effectiveness, cost-effectiveness, and barriers and facilitators of low-level support services for adults with HFA? We searched seven electronic databases, handsearched key journals and conducted web searches. Included studies were published in English and presented primary empirical data on a supportive intervention or service for adults with HFA. We defined ‘supportive intervention’ broadly, and only excluded interventions aiming to address a specific health condition. We included all outcomes (other than purely cognitive tests or task performance). Study quality was assessed using design specific tools and data were extracted using a standardised form. Data were synthesised narratively by intervention type (forest plots presented where possible) and by outcome. We also grouped effectiveness studies according to whether or not they used a two-group (controlled) evaluation design. We sought to identify the numbers of study participants within each study and intervention grouping, as well as whether or not the findings for each outcome were statistically significant (with non-significant results reported below). Systematic review: results We identified 9,512 records. After screening, 37 full-text studies were included in the final synthesis: 27 effectiveness studies, three economic studies, and eight qualitative studies (one study reported both effectiveness and qualitative data). 1 The quality of the effectiveness studies was mixed, with half the studies receiving high quality ratings (A) and half moderate (B) or low (C). The qualitative studies were of moderate to low quality. We identified the following types of intervention: Job interview training Employment support Social skills training and psychoeducation Music and dance Support and mentoring (university students) General support services Peer support groups Specialist multi-disciplinary teams Job interview training Three controlled studies evaluated the effects of job interview training (total number of participants N=76) on interview skills. All the studies were conducted in the USA and participants were mostly male and in their teens or early twenties. All reported significant positive effects on observed interview skills (N=76). One found job interview training to have a non-significant positive effect on social functioning and depression (N=28). One found job interview training to have a non-significant positive effect on employment (N=26). These findings suggest that job interview training is effective in improving interview performance, but evidence regarding other outcomes (including employment status) is lacking. Employment support Three controlled and two uncontrolled studies evaluated the effects of employment support (N=174) on employment status, earnings and other outcomes. Three studies were