The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.
The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.



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.



Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.



A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.



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.



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.



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 %).



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.
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA. Nicol22@pdx.edu.|Department of Medicine and School of Public Health, Oregon Health & Science University, Portland, OR, USA. Nicol22@pdx.edu.|Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA. Nicol22@pdx.edu.
Christina
C
Nicolaidis
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA.|Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.
Dora
D
Raymaker
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.|Department of Public Health, Food Studies and Nutrition, Burton Blatt Institute, Syracuse University, Syracuse, NY, USA.
Katherine
K
McDonald
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.
Steven
S
Kapp
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.|Indiana University Center for Health Services and Outcomes Research, Indianapolis, IN, USA.|Regenstrief Institute, Inc., Indianapolis, IN, USA.|Center for Health Information and Communication, Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service CIN 13-416, Richard L. Roudebush VA Medical Center, Indianapolis, IN, USA.
Michael
M
Weiner
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.
Elesia
E
Ashkenazy
Department of Medicine and School of Public Health, Oregon Health & Science University, Portland, OR, USA.|Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.|Veterans Affairs Portland Health Care System, Portland, OR, USA.
Martha
M
Gerrity
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.|Department of Family and Community Medicine, University of California, San Francisco, San Francisco, CA, USA.
Clarissa
C
Kripke
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA.|School of Medicine, Duke University, Durham, NC, USA.
Laura
L
Platt
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.
Amelia
A
Baggs
D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D001321:Autistic Disorder / Q000523:psychology / Q000628:therapy*; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D055812:Community-Based Participatory Research; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D009862:Online Systems; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011320:Primary Health Care / Q000379:methods*; D015203:Reproducibility of Results; D020377:Self Efficacy; D014481:United States; D055815:Young Adult
adults; autism; community-based participatory research; healthcare interactions; primary care