Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a “CBPR-Nested Delphi Process”

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Nicolaidis, C., Scharer, M., Raymaker, D. M., Vera, J., Edwards, T., Moura, I., Baker-Ericzén, M., Maslak, J., Yang, L. Q., Kripke-Ludwig, R., Kapp, S. K., Joyce, A., Wallington, A., & AASPIRE (2025). Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a “CBPR-Nested Delphi Process”. Autism, 29(8), 1959-1972. https://doi.org/10.1177/13623613251322082

Publication date: 5 Jun 2025 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
14
Publication authors identified as autistic
3 / 14 (21.4%)
  1. Christina Nicolaidis
  2. Mirah Scharer
  3. Dora M Raymaker *
  4. Joseph Vera
  5. Todd Edwards
  1. Ian Moura
  2. Mary Baker-Ericzén
  3. Joelle Maslak *
  4. Liu-Qin Yang
  5. Rachel Kripke-Ludwig
  1. Steven K. Kapp *
  2. Andrea Joyce
  3. Anna Wallington
  4. AASPIRE

Abstract

People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven “Delphi process” within our community-based participatory research approach in what we are calling a “CBPR-Nested Delphi Process.” The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults. Lay abstract Why was this project done? People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services. What were the goals of the project? To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys. What did the researchers do? We used a method called a “Delphi process” that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. What does this study add? The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers). What are the implications? Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults.

Related publications

These links indicate preprints, protocols, published versions, or related records identified in AutiHub.

Associated preprints

Confirmed Reliability level: High Manual

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
60
Total cited references integrated for this publication.
Cited references with an identified autistic author
16 / 60 (26.7%)
Cited author occurrences identified as autistic
40 / 311 (12.9%)
Among occurrences linked to AutiHub author records: 40 / 200 (20.0%). Distinct cited authors identified as autistic: 17 / 239 (7.1%).
Cited author occurrences linked to AutiHub author records
200 / 311 (64.3%)
Distinct linked cited authors: 133 / 239 (55.6%)
Linked cited-author occurrences not identified as autistic
160 / 200 (80.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 160 / 311 (51.4%). Distinct linked cited authors not identified as autistic: 116 / 133 (87.2%).
  2. John Baker , Karina Lovell , Neil Harris (2006). How expert are the experts? An exploration of the concept of ‘expert’ within Delphi panel techniques . Nurse Researcher, 14(1), 59-70. RCN Publishing Ltd..
    Type: Article DOI: 10.7748/nr2006.10.14.1.59.c6010 OpenAlex: https://openalex.org/W2135683387
    Crossref OpenAlex OpenCitations
  3. Norman Dalkey , Olaf Helmer (1963). An Experimental Application of the DELPHI Method to the Use of Experts . Management Science, 9(3), 458-467. Institute for Operations Research and the Management Sciences (INFORMS).
    Type: Article DOI: 10.1287/mnsc.9.3.458 OpenAlex: https://openalex.org/W2007367842
    Crossref OpenAlex OpenCitations
  5. Tatja Hirvikoski , Ellenor Mittendorfer-Rutz , Marcus Boman , Henrik Larsson , Paul Lichtenstein , Sven Bölte (2016). Premature mortality in autism spectrum disorder . British Journal of Psychiatry, 208(3), 232-238. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  6. Susan L. Morrow (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology, 52(2), 250-260. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-0167.52.2.250 OpenAlex: https://openalex.org/W2017532745
    Crossref OpenAlex OpenCitations
  8. Paul Turcotte , Mary Mathew , Lindsay Shea , Eugene Brusilovskiy , Stacy L. Nonnemacher (2016). Service Needs Across the Lifespan for Individuals with Autism . Journal of Autism and Developmental Disorders, 46(7), 2480-2489. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2787-4 OpenAlex: https://openalex.org/W2336858643
    Crossref OpenAlex OpenCitations
  9. Penelope M. Mullen (2003). Delphi: myths and reality . Journal of Health Organization and Management, 17(1), 37-52. Emerald.
    Type: Article DOI: 10.1108/14777260310469319 OpenAlex: https://openalex.org/W2042517582
    Crossref OpenAlex OpenCitations
  11. Shenae Calleja , Fakir M. Amirul Islam , Jonathan Kingsley , Rachael McDonald (2020). Healthcare access for autistic adults . Medicine, 99(29), e20899. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/md.0000000000020899 OpenAlex: https://openalex.org/W3043350455
    Crossref OpenAlex OpenCitations
  13. Barbara L. Brush , Shoou-Yih D. Lee , Adena Gabrysiak , Megan Jensen , Eliza Wilson-Powers , Chris M. Coombe et al. (2024). A CBPR-Enhanced Delphi Method: The Measurement Approaches to Partnership Success Case Study . Health Education & Behavior, 51(2), 212-217. SAGE Publications.
    Type: Article DOI: 10.1177/10901981221076400 OpenAlex: https://openalex.org/W4213039856
    Crossref OpenAlex OpenCitations
  15. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  16. Anthony F Jorm (2015). Using the Delphi expert consensus method in mental health research . Australian & New Zealand Journal of Psychiatry, 49(10), 887-897. SAGE Publications.
    Type: Article DOI: 10.1177/0004867415600891 OpenAlex: https://openalex.org/W2111751736
    Crossref OpenAlex OpenCitations
  17. Andrew Cashin , Thomas Buckley , Julian N Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
    Type: Article DOI: 10.1177/1744629516665242 OpenAlex: https://openalex.org/W2519892621
    Crossref OpenAlex OpenCitations
  20. Christabel Owens , Ann Ley , Peter Aitken (2008). Do different stakeholder groups share mental health research priorities? A four‐arm Delphi study . Health Expectations, 11(4), 418-431. Wiley.
    Type: Article DOI: 10.1111/j.1369-7625.2008.00492.x OpenAlex: https://openalex.org/W2129330738
    Crossref OpenAlex OpenCitations
  22. David Nicholas , Malvina Klag (2020). Critical Reflections on Employment Among Autistic Adults . Autism in Adulthood, 2(4), 289-295. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0006 OpenAlex: https://openalex.org/W3037617460
    Crossref OpenAlex OpenCitations
  23. Sanja M Hunt , Raj Bhopal (2004). Self report in clinical and epidemiological studies with non-English speakers: the challenge of language and culture . Journal of Epidemiology and Community Health, 58(7), 618-622. BMJ.
    Type: Article DOI: 10.1136/jech.2003.010074 OpenAlex: https://openalex.org/W2151714291
    Crossref OpenAlex OpenCitations
  24. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  27. Karen J. Ishler , David E. Biegel , Fei Wang , Tugba Olgac , Sarah Lytle , Stacy Miner et al. (2022). Service Use Among Transition-Age Youth with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 52(3), 1051-1065. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-04999-6 OpenAlex: https://openalex.org/W3153315461
    Crossref OpenAlex OpenCitations
  28. T K Frankena , J Naaldenberg , M Cardol , J V Meijering , G Leusink , H M J van Schrojenstein Lantman-de Valk (2016). Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study . BMJ Open, 6(8), e011861. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2016-011861 OpenAlex: https://openalex.org/W2508036628
    Crossref OpenAlex OpenCitations
  29. Jane Waggoner , Jan D. Carline , Steven J. Durning (2016). Is There a Consensus on Consensus Methodology? Descriptions and Recommendations for Future Consensus Research . Academic Medicine, 91(5), 663-668. Oxford University Press (OUP).
    Type: Article DOI: 10.1097/acm.0000000000001092 OpenAlex: https://openalex.org/W2328814245
    Crossref OpenAlex OpenCitations
  30. Thomas Frazier , Géraldine Dawson , Donna S. Murray , Andy Shih , Jessica Snyder Sachs , Angela Geiger (2018). Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders . Journal of Autism and Developmental Disorders, 48(11), 3965-3971. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3642-6 OpenAlex: https://openalex.org/W2807852720
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  31. Kana Grace , Anna Remington , Brynmor Lloyd‐Evans , Jade Davies , Laura Crane (2022). Loneliness in autistic adults: A systematic review . Autism, 26(8), 2117-2135. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221077721 OpenAlex: https://openalex.org/W4220790656
    Crossref OpenAlex OpenCitations
  32. Laura Graham Holmes , Casey J. Zampella , Caitlin Clements , Joseph P. McCleery , Brenna B. Maddox , Julia Parish‐Morris et al. (2020). A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum . Autism Research, 13(6), 970-987. Wiley.
    Type: Article DOI: 10.1002/aur.2275 OpenAlex: https://openalex.org/W3012300037
    Crossref OpenAlex OpenCitations
  33. Darren Hedley , Mirko Uljarević , Lauren Cameron , Santoshi Halder , Amanda L. Richdale , Cheryl Dissanayake (2017). Employment programmes and interventions targeting adults with autism spectrum disorder: A systematic review of the literature . Autism, 21(8), 929-941. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316661855 OpenAlex: https://openalex.org/W2515376401
    Crossref OpenAlex OpenCitations
  34. Calvin Solomon (2020). Autism and Employment: Implications for Employers and Adults with ASD . Journal of Autism and Developmental Disorders, 50(11), 4209-4217. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04537-w OpenAlex: https://openalex.org/W3025458710
    Crossref OpenAlex OpenCitations
  35. Patricia Howlin , Iliana Magiati (2017). Autism spectrum disorder . Current Opinion in Psychiatry, 30(2), 69-76. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/yco.0000000000000308 OpenAlex: https://openalex.org/W2569059432
    Crossref OpenAlex OpenCitations
  36. David Mason , Barry Ingham , Anna Urbanowicz , Cos Michael , Heather Birtles , Marc Woodbury‐Smith et al. (2019). A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults . Journal of Autism and Developmental Disorders, 49(8), 3387-3400. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04049-2 OpenAlex: https://openalex.org/W2945521062
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  37. Chia-Chien Hsu , Brian A. Sandford (2007). The Delphi Technique: Making Sense of Consensus . Scholarworks (University of Massachusetts Amherst), 12(10), 10. University of Massachusetts Amherst.
    Type: Article DOI: 10.7275/pdz9-th90 OpenAlex: https://openalex.org/W2583504027
    Crossref OpenAlex
  38. Anne M. Roux , Jessica E. Rast , Kelly Nye-Lengerman , Jonathan Purtle , Angela Lello , Paul Shattuck (2019). Identifying Patterns of State Vocational Rehabilitation Performance in Serving Transition-Age Youth on the Autism Spectrum . Autism in Adulthood, 1(2), 101-111. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0018 OpenAlex: https://openalex.org/W2904250289
    Crossref OpenAlex OpenCitations
  39. Julie Lounds Taylor (2017). When is a good outcome actually good? Autism, 21(8), 918-919. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317728821 OpenAlex: https://openalex.org/W2747948509
    Crossref OpenAlex OpenCitations
  40. Interagency Autism Coordinating Committee. (2020). IACC strategic plan for autism spectrum disorder (ASD) 2018-2019 update. U. S. Department of Health and Human Services Interagency Autism Coordinating Committee. http://iacc.hhs.gov/strategic-plan/2019/
    Type: Other
    Crossref
  41. Shengxin Liu , Henrik Larsson , Ralf Kuja-Halkola , Paul Lichtenstein , Agnieszka Butwicka , Mark J Taylor (2023). Age-related physical health of older autistic adults in Sweden: a longitudinal, retrospective, population-based cohort study . The Lancet Healthy Longevity, 4(7), e307-e315. Elsevier BV.
    Type: Article DOI: 10.1016/s2666-7568(23)00067-3 OpenAlex: https://openalex.org/W4379797676
    Crossref OpenAlex OpenCitations
  42. Brenna B. Maddox , Valerie L. Gaus (2019). Community Mental Health Services for Autistic Adults: Good News and Bad News . Autism in Adulthood, 1(1), 15-19. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0006 OpenAlex: https://openalex.org/W2802972396
    Crossref OpenAlex OpenCitations
  43. Ousseny Zerbo , Yinge Qian , Thomas Ray , Steve Sidney , Steve Rich , Maria L Massolo et al. (2019). Health Care Service Utilization and Cost Among Adults with Autism Spectrum Disorders in a U.S. Integrated Health Care System . Autism in Adulthood, 1(1), 27-36. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0004 OpenAlex: https://openalex.org/W2802980590
    Crossref OpenAlex OpenCitations
  44. A. Roestorf , D.M. Bowler , M.K. Deserno , Patricia Howlin , L. Klinger , H. McConachie et al. (2019). “Older Adults with ASD: The Consequences of Aging.” Insights from a series of special interest group meetings held at the International Society for Autism Research 2016–2017 . Research in Autism Spectrum Disorders, 63, 3-12. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2018.08.007 OpenAlex: https://openalex.org/W2908068945
    Crossref OpenAlex OpenCitations
  45. Ashley A. Pallathra , Lucero Cordero , Kennedy Wong , Edward S. Brodkin (2019). Psychosocial Interventions Targeting Social Functioning in Adults on the Autism Spectrum: a Literature Review . Current Psychiatry Reports, 21(1), 5-5. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-019-0989-0 OpenAlex: https://openalex.org/W2912577220
    Crossref OpenAlex OpenCitations
  47. Mayring P. (2019). Qualitative content analysis: Demarcation, varieties, developments . Forum: Qualitative Social Research, 20.
    Type: Other
    Crossref
  48. Paul Shattuck , Tamara Garfield , Anne M. Roux , Jessica E. Rast , Kristy A. Anderson , Elizabeth McGhee Hassrick et al. (2020). Services for Adults With Autism Spectrum Disorder: a Systems Perspective . Current Psychiatry Reports, 22(3), 13-13. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-020-1136-7 OpenAlex: https://openalex.org/W3004564360
    Crossref OpenAlex OpenCitations
  49. Micah Mazurek , Eleonora Sadikova , Nancy Cheak‐Zamora , Amber Hardin , Kristin Sohl , Beth A. Malow (2023). Health Care Needs, Experiences, and Perspectives of Autistic Adults . Autism in Adulthood, 5(1), 51-62. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0069 OpenAlex: https://openalex.org/W4311844611
    Crossref OpenAlex
  50. Christina Nicolaidis (2019). Autism in Adulthood: The New Home for Our Emerging Field . Autism in Adulthood, 1(1), 1-3. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.28999.cjn OpenAlex: https://openalex.org/W2964776254
    Crossref OpenAlex OpenCitations
  51. Charlotte E. Rees , Paul E.S. Crampton , Lynn V. Monrouxe (2020). Re-visioning Academic Medicine Through a Constructionist Lens . Academic Medicine, 95(6), 846-850. Oxford University Press (OUP).
    Type: Article DOI: 10.1097/acm.0000000000003109 OpenAlex: https://openalex.org/W2994546447
    Crossref OpenAlex OpenCitations
  52. Ari Ne'eman * (2021). When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing” . AMA Journal of Ethics, 23(7), E569-575. American Medical Association (AMA).
    Type: Article DOI: 10.1001/amajethics.2021.569 OpenAlex: https://openalex.org/W3182650589
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  56. Ann Wagner , Leslie Caplan , Denise Juliano-Bult , Nicole Williams (2020). Improving the Rigor of Research on Autism in Adulthood Requires Valid and Reliable Measurement Tools . Autism in Adulthood, 2(3), 174-176. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0001 OpenAlex: https://openalex.org/W3042126566
    Crossref OpenAlex OpenCitations
  57. Raymaker D. (2019). Autistic community and the neurodiversity movement: Stories from the frontline . Autistic community and the neurodiversity movement: Stories from the frontline, 133.
    Type: Other
    Crossref
  59. Anne M. Roux , Jessica Rast , Kristy A. Anderson , Julianna A Rava , Paul Shuttuck (2015). Transition into Young Adulthood: National Autism Indicators Report . A.J. Drexel Autism Institute.
    Type: Report DOI: 10.17918/nairtransition2015 OpenAlex: https://openalex.org/W4313567965
    Crossref OpenAlex OpenCitations
  60. Chi-Shin Wu , Hui-Ju Tsai , Yi-Ling Chien , Susan Shur-Fen Gau (2025). All-Cause Mortality and Specific Causes of Death in Autism: A Nationwide Analysis . Autism in Adulthood, 7(1), 81-92. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2023.0103 OpenAlex: https://openalex.org/W4392155649
    Crossref OpenAlex