The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

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Nicolaidis, C., Raymaker, D. M., McDonald, K., Kapp, S. K., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., & Baggs, A. E. (2016). The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. Journal of General Internal Medicine, 31(10), 1180-1189. https://doi.org/10.1007/s11606-016-3763-6

Publication date: 6 Jun 2016 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
10
Publication authors identified as autistic
3 / 10 (30.0%)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Katherine McDonald
  4. Steven K. Kapp *
  5. Michael Weiner
  1. Elesia Ashkenazy *
  2. Martha Gerrity
  3. Clarissa Kripke
  4. Laura Platt
  5. Amelia E.V. Baggs

Abstract

BACKGROUND: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS: The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

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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
27
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 27 (29.6%)
Cited author occurrences identified as autistic
20 / 124 (16.1%)
Among occurrences linked to AutiHub author records: 20 / 74 (27.0%). Distinct cited authors identified as autistic: 5 / 81 (6.2%).
Cited author occurrences linked to AutiHub author records
74 / 124 (59.7%)
Distinct linked cited authors: 35 / 81 (43.2%)
Linked cited-author occurrences not identified as autistic
54 / 74 (73.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 54 / 124 (43.5%). Distinct linked cited authors not identified as autistic: 30 / 35 (85.7%).
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