Consensus on High-Priority Outcomes to Be Used in the Evaluation of Services for Autistic Adults: Results from a CBPR-Nested Delphi Process

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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., Taylor, J. L., Horner-Johnson, W., Caplan, R., Frowner, E., Smith, I., Siddeek, Z.,..., & Love, J. (2024). Consensus on High-Priority Outcomes to Be Used in the Evaluation of Services for Autistic Adults: Results from a CBPR-Nested Delphi Process [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/34p7d

Publication date: 6 Aug 2024 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
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Authors

Publication authors
22
Publication authors identified as autistic
4 / 22 (18.2%)
  1. Christina Nicolaidis
  2. Mirah Scharer
  3. Dora M Raymaker *
  4. Joseph Vera
  5. Todd Edwards
  6. Ian Moura
  7. Mary Baker-Ericzén
  8. Joelle Maslak *
  1. Liu-Qin Yang
  2. Rachel Kripke-Ludwig
  3. Steven K. Kapp *
  4. Andrea Joyce
  5. Anna Wallington
  6. Julie Lounds Taylor
  7. Willi Horner-Johnson
  8. Reid Caplan *
  1. Emanuel Frowner
  2. Ivanova Smith
  3. Zack Siddeek
  4. Clarissa Kripke
  5. Katherine McDonald
  6. Julia Love

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 (CBPR) approach in what we are calling a “CBPR-Nested Delphi Process.” The process allowed us to reach 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.

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Cited references
48
Total cited references integrated for this publication.
Cited references with an identified autistic author
14 / 48 (29.2%)
Cited author occurrences identified as autistic
36 / 264 (13.6%)
Among occurrences linked to AutiHub author records: 36 / 171 (21.1%). Distinct cited authors identified as autistic: 17 / 208 (8.2%).
Cited author occurrences linked to AutiHub author records
171 / 264 (64.8%)
Distinct linked cited authors: 120 / 208 (57.7%)
Linked cited-author occurrences not identified as autistic
135 / 171 (78.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 135 / 264 (51.1%). Distinct linked cited authors not identified as autistic: 103 / 120 (85.8%).
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