Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review

Added on 24/10/2024

Type de contenu

Journal article of the type Scientific literature review ( ; english)

Amanda Timmerman * , Vasiliki Totsika , Valerie Lye , Laura Crane , Audrey Linden , Elizabeth Pellicano
Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review published in the journal "Autism" Preprint, 17 pages , doi: 10.1177/13623613241287586

*One co-author has publicly identified as autistic. [Learn more about this mention]

=> Unrestricted access and free

Summary/Presentation

Autistic people are more likely to have co-occurring mental health conditions compared to the general population, and mental health interventions have been identified as a top research priority by autistic people and the wider autism community. Autistic adults have also communicated that quality of life is the outcome that matters most to them in relation to mental health research and that they want to be involved more actively in the research process. Our systematic review aimed to determine the extent and nature of (1) quality of life measurement in randomised controlled trials of mental health interventions for autistic adults and (2) community involvement taking place within identified randomised controlled trials. We searched Medline, Embase, APA PsycInfo, Web of Science and grey literature sources. After screening over 10,000 records, 19 studies were eligible and five of those studies measured quality of life as an outcome. Of those five, three included community involvement and two did not report on community involvement. We conclude there is a need for increased use of quality of life measurement when trialling mental health interventions, including the use of measures validated for autistic adults – which would be facilitated by greater autistic involvement in the research process.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • Autism (n.d.). "Community involvement reporting: Frequently asked questions". Sage. (Source)

  • M. Ayres, J. Parr, J. Rodgers, D. Mason, L. Avery, D. Flynn (2018). "A systematic review of quality of life of adults on the autism spectrum". Autism, 22(7). doi:10.1177/1362361317714988

  • A. Baxter, K. Scott, T. Vos, H. Whiteford (2013). "Global prevalence of anxiety disorders: a systematic review and meta-regression". Psychol. Med., 43(5). doi:10.1017/s003329171200147x

  • T. Benevides, S. Shore, K. Palmer, P. Duncan, A. Plank, M. Andresen, R. Caplan*, B. Cook, D. Gassner*, B. Lory Hector*, L. Morgan, L. Nebeker, Y. Purkis, B. Rankowski, K. Wittig, S. Coughlin (2020). "Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project". Autism, 24(4). doi:10.1177/1362361320908410

  • B. Blair Braden, B. Pagni, L. Monahan, M. Walsh, M. Dixon, S. Delaney, L. Ballard, J. Ware (2022). "Quality of life in adults with autism spectrum disorder: influence of age, sex, and a controlled, randomized mindfulness-based stress reduction pilot intervention". Qual Life Res, 31(5). doi:10.1007/s11136-021-03013-x

  • J. Brede, E. Cage, J. Trott, L. Palmer, A. Smith, L. Serpell, W. Mandy, A. Russell (2022). "'We Have to Try to Find a Way, a Clinical Bridge' - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis". Clinical Psychology Review, 93. doi:10.1016/j.cpr.2022.102131

  • E. Cage, J. Di Monaco, V. Newell (2018). "Experiences of Autism Acceptance and Mental Health in Autistic Adults". J Autism Dev Disord, 48(2). doi:10.1007/s10803-017-3342-7

  • F. Callard, D. Rose, T. Wykes (2012). "Close to the bench as well as at the bedside: involving service users in all phases of translational research". Health Expectations, 15(4). doi:10.1111/j.1369-7625.2011.00681.x

  • L. Camm-Crosbie, L. Bradley, R. Shaw, S. Baron-Cohen, S. Cassidy (2019). "'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality". Autism, 23(6). doi:10.1177/1362361318816053

  • Y. Chien, W. Tsai, W. Chen, C. Yang, S. Shur-Fen Gau, W. Soong, E. Laugeson, Y. Chiu (2023). "Effectiveness, durability, and clinical correlates of the PEERS social skills intervention in young adults with autism spectrum disorder: the first evidence outside North America". Psychol. Med., 53(3). doi:10.1017/s0033291721002385

  • J. Connell, A. O'Cathain, J. Brazier (2014). "Measuring quality of life in mental health: Are we asking the right questions?". Social Science & Medicine, 120. doi:10.1016/j.socscimed.2014.08.026

  • K. Corden, R. Brewer, E. Cage (2022). "A Systematic Review of Healthcare Professionals' Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People". Rev J Autism Dev Disord, 9(3). doi:10.1007/s40489-021-00263-w

  • H. Coulter, M. Donnelly, J. Mallett, W. George Kernohan (2022). "Heart Rate Variability Biofeedback to Treat Anxiety in Young People With Autism Spectrum Disorder: Findings From a Home-Based Pilot Study". JMIR Form Res, 6(8). doi:10.2196/37994

  • J. Cusack*, R. Sterry (2015). "Your questions: Shaping autism research". Autistica. (Source)

  • A. Danforth, C. Grob, C. Struble, A. Feduccia, N. Walker*, L. Jerome, B. Yazar-Klosinski, A. Emerson (2018). "Reduction in social anxiety after MDMA-assisted psychotherapy with autistic adults: a randomized, double-blind, placebo-controlled pilot study". Psychopharmacology, 235(11). doi:10.1007/s00213-018-5010-9

  • E. Diener, R. Emmons, R. Larsen, S. Griffin (1985). "The Satisfaction With Life Scale". Journal of Personality Assessment, 49(1). doi:10.1207/s15327752jpa4901_13

  • A. Dobrescu, B. Nussbaumer-Streit, I. Klerings, G. Wagner, E. Persad, I. Sommer, H. Herkner, G. Gartlehner (2021). "Restricting evidence syntheses of interventions to English-language publications is a viable methodological shortcut for most medical topics: a systematic review". Journal of Clinical Epidemiology, 137. doi:10.1016/j.jclinepi.2021.04.012

  • EuroQoL. (n.d.). "EQ-5D is a family of instruments to describe and value health". EuroQol Research Foundation. (Source)

  • Y. Feng, T. Kohlmann, M. Janssen, I. Buchholz (2021). "Psychometric properties of the EQ-5D-5L: a systematic review of the literature". Qual Life Res, 30(3). doi:10.1007/s11136-020-02688-y

  • S. Gaigg, P. Flaxman, G. McLaven, R. Shah, D. Bowler, B. Meyer, A. Roestorf, C. Haenschel, J. Rodgers, M. South (2020). "Self-guided mindfulness and cognitive behavioural practices reduce anxiety in autistic adults: A pilot 8-month waitlist-controlled trial of widely available online tools". Autism, 24(4). doi:10.1177/1362361320909184

  • D. Golicki, K. Młyńczak (2022). "Measurement Properties of the EQ-5D-Y: A Systematic Review". Value in Health, 25(11). doi:10.1016/j.jval.2022.05.013

  • K. Gotham, A. Marvin, J. Lounds Taylor, Z. Warren, C. Anderson, P. Law, J. Law, P. Lipkin (2015). "Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data". Autism, 19(7). doi:10.1177/1362361315583818

  • E. Hesselmark, S. Plenty, S. Bejerot (2014). "Group cognitive behavioural therapy and group recreational activity for adults with autism spectrum disorders: A preliminary randomized controlled trial". Autism, 18(6). doi:10.1177/1362361313493681

  • K. Haraldstad, A. Wahl, R. Andenæs, J. Andersen, M. Andersen, E. Beisland, C. Borge, E. Engebretsen, M. Eisemann, L. Halvorsrud, T. Hanssen, A. Haugstvedt, T. Haugland, V. Johansen, M. Larsen, L. Løvereide, B. Løyland, L. Kvarme, P. Moons, T. Norekvål, L. Ribu, G. Rohde, K. Urstad, S. Helseth (2019). "A systematic review of quality of life research in medicine and health sciences". Qual Life Res, 28(10). doi:10.1007/s11136-019-02214-9

  • G. Hickey, S. Brearley, T. Coldham, S. Denegri, G. Green, S. Staniszewska, D. Tembo, K. Torok, K. Turner (2018). "Guidance on co-producing a research project". NIHR INVOLVE. (Source)

  • M. Hollocks, J. Wei Lerh, I. Magiati, R. Meiser-Stedman, T. Brugha (2019). "Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis". Psychol. Med., 49(4). doi:10.1017/s0033291718002283

  • L. Graham Holmes, C. Zampella, C. Clements, J. McCleery, B. Maddox, J. Parish‐Morris, M. Udhnani, R. Schultz, J. Miller (2020). "A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum". Autism Research, 13(6). doi:10.1002/aur.2275

  • J. Horwood, K. Cooper, H. Harvey, L. Davies, A. Russell (2021). "The experience of autistic adults accessing adapted cognitive behaviour therapy: ADEPT (Autism Depression Trial) qualitative evaluation". Research in Autism Spectrum Disorders, 86. doi:10.1016/j.rasd.2021.101802

  • M. Mahbub Hossain, N. Khan, A. Sultana, P. Ma, E. Lisako McKyer, H. Uddin Ahmed, N. Purohit (2020). "Prevalence of comorbid psychiatric disorders among people with autism spectrum disorder: An umbrella review of systematic reviews and meta-analyses". Psychiatry Research, 287. doi:10.1016/j.psychres.2020.112922

  • R. Maree Hunter, G. Baio, T. Butt, S. Morris, J. Round, N. Freemantle (2015). "An Educational Review of the Statistical Issues in Analysing Utility Data for Cost-Utility Analysis". PharmacoEconomics, 33(4). doi:10.1007/s40273-014-0247-6

  • NIHR INVOLVE. (n.d.). "INVOLVE is no longer actively updated or supported". National Institute for Health and Care Research. (Source)

  • M. Janssen, A. Simon Pickard, D. Golicki, C. Gudex, M. Niewada, L. Scalone, P. Swinburn, J. Busschbach (2013). "Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study". Qual Life Res, 22(7). doi:10.1007/s11136-012-0322-4

  • J. Jivraj, L. Sacrey, A. Newton, D. Nicholas, L. Zwaigenbaum (2014). "Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review". Autism, 18(7). doi:10.1177/1362361314539858

  • A. Louise Jordan, M. Marczak, J. Knibbs (2021). "'I Felt Like I was Floating in Space': Autistic Adults' Experiences of Low Mood and Depression". J Autism Dev Disord, 51(5). doi:10.1007/s10803-020-04638-6

  • A. Devianee Keetharuth, D. Rowen, J. Bue Bjorner, J. Brazier (2021). "Estimating a Preference-Based Index for Mental Health From the Recovering Quality of Life Measure: Valuation of Recovering Quality of Life Utility Index". Value in Health, 24(2). doi:10.1016/j.jval.2020.10.012

  • R. Khanna, K. Jariwala, D. West-Strum (2015). "Validity and reliability of the Medical Outcomes Study Short-Form Health Survey version 2 (SF-12v2) among adults with autism". Research in Developmental Disabilities, 43-44. doi:10.1016/j.ridd.2015.06.006

  • M. Lai, C. Kassee, R. Besney, S. Bonato, L. Hull, W. Mandy, P. Szatmari, S. Ameis (2019). "Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis". The Lancet Psychiatry, 6(10). doi:10.1016/s2215-0366(19)30289-5

  • G. Yu Hin Lam, S. Sabnis, M. Migueliz Valcarlos, J. Wolgemuth (2021). "A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults". Autism in Adulthood, 3(1). doi:10.1089/aut.2020.0053

  • R. Lamsal, J. Zwicker (2017). "Economic Evaluation of Interventions for Children with Neurodevelopmental Disorders: Opportunities and Challenges". Appl Health Econ Health Policy, 15(6). doi:10.1007/s40258-017-0343-9

  • D. Lee, G. Frey, D. Cothran, J. Harezlak, P. Shih (2022). "Effects of a Gamified, Behavior Change Technique–Based Mobile App on Increasing Physical Activity and Reducing Anxiety in Adults With Autism Spectrum Disorder: Feasibility Randomized Controlled Trial". JMIR Form Res, 6(7). doi:10.2196/35701

  • J. Lei, L. Jones, M. Brosnan (2021). "Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use". Autism, 25(5). doi:10.1177/1362361320987963

  • A. Linden, L. Best, F. Elise, D. Roberts, A. Branagan, Y. Boon Ernest Tay, L. Crane, J. Cusack*, B. Davidson, I. Davidson, C. Hearst*, W. Mandy, D. Rai, E. Smith, K. Gurusamy (2023). "Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: A systematic review and network meta-analysis of randomised controlled trials". Autism, 27(1). doi:10.1177/13623613221117931

  • C. Lord, T. Charman, A. Havdahl, P. Carbone, E. Anagnostou, B. Boyd, T. Carr, P. de Vries, C. Dissanayake, G. Divan, C. Freitag, M. Gotelli, C. Kasari, M. Knapp, P. Mundy, A. Plank, L. Scahill, C. Servili, P. Shattuck, E. Simonoff, A. Tepper Singer, V. Slonims, P. Wang, M. Celica Ysrraelit, R. Jellett, A. Pickles, J. Cusack*, P. Howlin, P. Szatmari, A. Holbrook, C. Toolan, J. McCauley (2022). "The Lancet Commission on the future of care and clinical research in autism". The Lancet, 399(10321). doi:10.1016/s0140-6736(21)01541-5

  • D. Mason, J. Mackintosh, H. McConachie, J. Rodgers, T. Finch, J. Parr (2019). "Quality of life for older autistic people: The impact of mental health difficulties". Research in Autism Spectrum Disorders, 63. doi:10.1016/j.rasd.2019.02.007

  • D. Mason, H. McConachie, D. Garland, A. Petrou, J. Rodgers, J. Parr (2018). "Predictors of quality of life for autistic adults". Autism Research, 11(8). doi:10.1002/aur.1965

  • D. Mason, J. Rodgers, D. Garland, C. Wilson, J. Parr, H. McConachie (2022). "Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale". healthopenres, 4. doi:10.12688/amrcopenres.13030.1

  • H. McConachie, D. Mason, J. Parr, D. Garland, C. Wilson, J. Rodgers (2018). "Enhancing the Validity of a Quality of Life Measure for Autistic People". J Autism Dev Disord, 48(5). doi:10.1007/s10803-017-3402-z

  • H. McConachie, C. Wilson, D. Mason, D. Garland, J. Parr, A. Rattazzi, J. Rodgers, S. Skevington, M. Uljarevic, I. Magiati (2020). "What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries". Autism in Adulthood, 2(1). doi:10.1089/aut.2019.0008

  • C. McDougle, J. Holmes, D. Carlson, G. Pelton, D. Cohen, L. Price (1998). "A Double-blind, Placebo-Controlled Study of Risperidone in Adults With Autistic Disorder and Other Pervasive Developmental Disorders". Arch Gen Psychiatry, 55(7). doi:10.1001/archpsyc.55.7.633

  • A. McVey, B. Dolan, K. Willar, S. Pleiss, J. Karst, C. Casnar, C. Caiozzo, E. Vogt, N. Gordon, A. Vaughan Van Hecke (2016). "A Replication and Extension of the PEERS® for Young Adults Social Skills Intervention: Examining Effects on Social Skills and Social Anxiety in Young Adults with Autism Spectrum Disorder". J Autism Dev Disord, 46(12). doi:10.1007/s10803-016-2911-5

  • A. Montazeri, M. Vahdaninia, S. Javad Mousavi, M. Asadi-Lari, S. Omidvari, M. Tavousi (2011). "The 12-item medical outcomes study short form health survey version 2.0 (SF-12v2): a population-based validation study from Tehran, Iran". Health Qual Life Outcomes, 9(1). doi:10.1186/1477-7525-9-12

  • L. Moore, F. Larkin, S. Foley (2024). "Mental Health Professionals' Experiences of Adapting Mental Health Interventions for Autistic Adults: A Systematic Review and Thematic Synthesis". J Autism Dev Disord, 54(7). doi:10.1007/s10803-023-06006-6

  • M. Oh, E. Laugeson, J. Kim, K. Lee, J. Kim, S. Lee, B. Lim, S. Cha, G. Bong, N. Yoon, G. Ho Bahn, H. Jeong Yoo (2021). "A Randomized Controlled Trial of the Korean Version of the Program for the Education and Enrichment of Relational Skills for Young Adults (PEERS®-YA-K) With Autism Spectrum Disorder: A Pilot Study". Front. Psychiatry, 12. doi:10.3389/fpsyt.2021.730448

  • World Health Organization. (1996). "WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment: Field trial version", December 1996. Division of Mental Health, World Health Organization. (Source)

  • World Health Organization. (2021, September 13). "Depression" [Fact sheet]. (Source)

  • T. Oswald, B. Winder-Patel, S. Ruder, G. Xing, A. Stahmer, M. Solomon (2018). "A Pilot Randomized Controlled Trial of the ACCESS Program: A Group Intervention to Improve Social, Adaptive Functioning, Stress Coping, and Self-Determination Outcomes in Young Adults with Autism Spectrum Disorder". J Autism Dev Disord, 48(5). doi:10.1007/s10803-017-3421-9

  • M. Page, J. McKenzie, P. Bossuyt, I. Boutron, T. Hoffmann, C. Mulrow, L. Shamseer, J. Tetzlaff, E. Akl, S. Brennan, R. Chou, J. Glanville, J. Grimshaw, A. Hróbjartsson, M. Lalu, T. Li, E. Loder, E. Mayo-Wilson, S. McDonald, L. McGuinness, L. Stewart, J. Thomas, A. Tricco, V. Welch, P. Whiting, D. Moher (2021). "The PRISMA 2020 statement: An updated guideline for reporting systematic reviews". Journal of Clinical Epidemiology, 134. doi:10.1016/j.jclinepi.2021.03.001

  • B. Pagni, E. Hill, M. J.M. Walsh, S. Delaney, D. Ogbeama, L. Monahan, J. Cook, N. Guerithault, M. Dixon, L. Ballard, B. Blair Braden (2023). "Distinct and shared therapeutic neural mechanisms of mindfulness-based and social support stress reduction groups in adults with autism spectrum disorder". jpn, 48(2). doi:10.1503/jpn.220159

  • B. Pagni, M. Walsh, E. Foldes, A. Sebren, M. Dixon, N. Guerithault, B. Blair Braden (2020). "The neural correlates of mindfulness‐induced depression reduction in adults with autism spectrum disorder: A pilot study". J of Neuroscience Research, 98(6). doi:10.1002/jnr.24600

  • J. Pahnke, M. Jansson-Fröjmark, G. Andersson, J. Bjureberg, J. Jokinen, B. Bohman, T. Lundgren (2023). "Acceptance and commitment therapy for autistic adults: A randomized controlled pilot study in a psychiatric outpatient setting". Autism, 27(5). doi:10.1177/13623613221140749

  • J. Painter, R. Hastings, B. Ingham, L. Trevithick, A. Roy (2018). "Associations Between Mental Health Problems and Challenging Behavior in Adults With Intellectual Disabilities: A Test of the Behavioral Equivalents Hypothesis". Journal of Mental Health Research in Intellectual Disabilities, 11(2). doi:10.1080/19315864.2018.1431747

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201

  • N. Patrícia Freire Pequeno, N. Louise de Araújo Cabral, D. Maria Marchioni, S. Carla Vieira Cunha Lima, C. de Oliveira Lyra (2020). "Quality of life assessment instruments for adults: a systematic review of population-based studies". Health Qual Life Outcomes, 18(1). doi:10.1186/s12955-020-01347-7

  • Critical Appraisal Skills Programme. (n.d.). "CASP checklist: CASP randomised controlled trial checklist". (Source)

  • L. Quadt, S. Garfinkel, J. Mulcahy, D. EO Larsson, M. Silva, A. Jones, C. Strauss, H. Critchley (2021). "Interoceptive training to target anxiety in autistic adults (ADIE): A single-center, superiority randomized controlled trial". EClinicalMedicine, 39. doi:10.1016/j.eclinm.2021.101042

  • U. Ravens-Sieberer, N. Wille, X. Badia, G. Bonsel, K. Burström, G. Cavrini, N. Devlin, A. Egmar, N. Gusi, M. Herdman, J. Jelsma, P. Kind, P. Olivares, L. Scalone, W. Greiner (2010). "Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study". Qual Life Res, 19(6). doi:10.1007/s11136-010-9649-x

  • L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2). doi:10.1177/1362361320967790

  • A. Roestorf, P. Howlin, D. Bowler (2022). "Ageing and autism: A longitudinal follow-up study of mental health and quality of life in autistic adults". Front. Psychol., 13. doi:10.3389/fpsyg.2022.741213

  • A. Russell, D. Gaunt, K. Cooper, S. Barton, J. Horwood, D. Kessler, C. Metcalfe, I. Ensum, B. Ingham, J. Parr, D. Rai, N. Wiles (2020). "The feasibility of low-intensity psychological therapy for depression co-occurring with autism in adults: The Autism Depression Trial (ADEPT) – a pilot randomised controlled trial". Autism, 24(6). doi:10.1177/1362361319889272

  • A. Russell, D. Gaunt, K. Cooper, J. Horwood, S. Barton, I. Ensum, B. Ingham, J. Parr, C. Metcalfe, D. Rai, D. Kessler, N. Wiles (2019). "Guided self-help for depression in autistic adults: the ADEPT feasibility RCT". Health Technol Assess, 23(68). doi:10.3310/hta23680

  • A. Russell, J. O’Dwyer, L. Bryant, A. House, J. Birtwistle, S. Meer, A. Wright-Hughes, R. Walwyn, E. Graham, A. Farrin, C. Hulme (2018). "The feasibility of using the EQ-5D-3L with adults with mild to moderate learning disabilities within a randomized control trial: a qualitative evaluation". Pilot Feasibility Stud, 4(1). doi:10.1186/s40814-018-0357-6

  • E. Rydzewska, L. Anne Hughes-McCormack, C. Gillberg, A. Henderson, C. MacIntyre, J. Rintoul, S. Cooper (2018). "Prevalence of long-term health conditions in adults with autism: observational study of a whole country population". BMJ Open, 8(8). doi:10.1136/bmjopen-2018-023945

  • K. Schulz, D. Altman, D. Moher, I. (2010). "CONSORT 2010 Statement: updated guidelines for reporting parallel group randomised trials". BMJ, 340(mar23 1). doi:10.1136/bmj.c332

  • S. Skevington, M. Lotfy, K. O'Connell (2004). "The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group". Qual Life Res, 13(2). doi:10.1023/b:qure.0000018486.91360.00

  • A. Spek, N. van Ham, I. Nyklíček (2013). "Mindfulness-based therapy in adults with an autism spectrum disorder: A randomized controlled trial". Research in Developmental Disabilities, 34(1). doi:10.1016/j.ridd.2012.08.009

  • S. Staniszewska, J. Brett, I. Simera, K. Seers, C. Mockford, S. Goodlad, D. Altman, D. Moher, R. Barber, S. Denegri, A. Entwistle, P. Littlejohns, C. Morris, R. Suleman, V. Thomas, C. Tysall (2017). "GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research". BMJ. doi:10.1136/bmj.j3453

  • E. Stark, D. Ali, A. Ayre, N. Schneider, S. Parveen, K. Marais, N. Holmes, R. Pender (2021). "Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective". Autism in Adulthood, 3(2). doi:10.1089/aut.2020.0050

  • A. Strydom, A. Bosco, V. Vickerstaff, R. Hunter, A. Hassiotis (2020). "Clinical and cost effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour - randomised trial". BMC Psychiatry, 20(1). doi:10.1186/s12888-020-02577-1

  • G. Sáez-Suanes, M. Álvarez-Couto (2022). "Factors Associated with Quality of Life in Adults with Autism Spectrum Disorder: A Systematic Review". Rev J Autism Dev Disord, 9(3). doi:10.1007/s40489-021-00254-x

  • F. Westlake, A. Hassiotis, G. Unwin, V. Totsika (2021). "The role of behaviour problems in screening for mental ill-health in adults with intellectual disability". The European Journal of Psychiatry, 35(2). doi:10.1016/j.ejpsy.2020.11.002

  • C. Wijker, R. Leontjevas, A. Spek, M. Enders-Slegers (2020). "Effects of Dog Assisted Therapy for Adults with Autism Spectrum Disorder: An Exploratory Randomized Controlled Trial". J Autism Dev Disord, 50(6). doi:10.1007/s10803-019-03971-9

  • S. Willemsen-Swinkels (1995). "Failure of Naltrexone Hydrochloride to Reduce Self-Injurious and Autistic Behavior in Mentally Retarded Adults". Arch Gen Psychiatry, 52(9). doi:10.1001/archpsyc.1995.03950210060011

  • Z. Williams*, K. Gotham (2021). "Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory". Autism Research, 14(8). doi:10.1002/aur.2519

  • B. Üstün (2010). "Measuring health and disability: Manual for WHO Disability Assessment Schedule WHODAS 2.0".


 
Summarize/Comment on/Translate this reference?