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

Nicolaidis, Christina; Raymaker, Dora; McDonald, Katherine; Kapp, Steven; Weiner, Michael; Ashkenazy, Elesia; Gerrity, Martha; Kripke, Clarissa; Platt, Laura; Baggs, Amelia

doi:10.1007/s11606-016-3763-6

Cited by 150Autism Spectrum Disorder ResearchPatient-Provider Communication in HealthcareHealth Education and Validation

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

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Nicolaidis, Christina, Raymaker, Dora, McDonald, Katherine, Kapp, Steven, Weiner, Michael, Ashkenazy, Elesia, Gerrity, Martha, Kripke, Clarissa +2 more·2016·Journal of General Internal Medicine

DOI 10.1007/s11606-016-3763-6PMC PMC5023610

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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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AASPIRE's Autism Healthcare Accommodations Tool has decreased the number of barriers to care faced by autistic adults by 30% and improved healthcare provider self-efficacy and patient-provider communication.
“AASPIRE ' s Autism Healthcare Accommodations Tool -a customized communication and sensory accommodations report builder -has decreased the number of barriers to care faced by autistic adults by 30%, and improved healthcare provider self-ef fi cacy and patient -provider communication.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [29]
The INTERVENTIONS summary reports that mean barriers to care fell from 4.07 to 2.82—about 31%—and that satisfaction with PCP communication improved in a pre/post evaluation. The Toolkit Evaluation Study identifies the increased self-efficacy as patients’ ability to navigate healthcare, not provider self-efficacy. These outcomes were evaluated for the broader toolkit, so the paper does not establish that the AHAT alone caused them. (LLM, conf=0.89)
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Authors: Nicolaidis, C., Raymaker, D., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., & Baggs, A.
Affiliations: Portland State University (US)
Syracuse University (US)
United States Department of Veterans Affairs (US)
Oregon Health & Science University (US)
University of California, San Francisco (US)
Corresponding author: Nicolaidis, Christina
ORCID: Nicolaidis, Christina
Raymaker, Dora
McDonald, Katherine
Kapp, Steven
Weiner, Michael
Gerrity, Martha
Kripke, Clarissa
Platt, Laura
Venue: Journal of General Internal Medicine
Publisher: Springer Science and Business Media LLC
Published: 2016-06-06
Volume: 31
Issue: 10
Pages: 1180-1189
ISSN: 0884-8734 (ISSN-L)
1525-1497
DOI: 10.1007/s11606-016-3763-6
PMC: PMC5023610
OpenAlex: W2416392649
Cited by: 150
References: 24
Citations by year: 2026: 22 · 2025: 17 · 2024: 22 · 2023: 19 · 2022: 16 · 2021: 18 · 2020: 14 · 2019: 11 · 2018: 6 · 2017: 2 · 2016: 3
FWCI: 4.67
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: www.springer.com/tdm (unspecified)
Locations: Journal of General Internal Medicine (publishedVersion)
PubMed Central (publishedVersion)
PubMed (publishedVersion)
PDXScholar (Portland State University) (submittedVersion)
Funders: National Institute of Mental Health (R34MH092503)
Topics: Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Social Sciences › Education › Health Education and Validation
Keywords: autism spectrum disorder, autistic adults, primary care, patient-provider communication, barriers to care, self-advocacy, community-based participatory research, cognitive interviewing, test-retest reliability
MeSH terms: Adolescent, Adult, Aged, Attitude to Health, Autistic Disorder, Communication, Female, Health Services Accessibility, Humans, Interview, Psychological, Male, Middle Aged, Online Systems, Physician-Patient Relations, Primary Health Care, United States, Reproducibility of Results, Caregivers, Patient Satisfaction, Self Efficacy, Community-Based Participatory Research, Young Adult

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

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