Autism : the International Journal of Research and Practice
Autistic people -- Services, Autism -- Research -- Citizen participation
There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly, and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The AASPIRE Visit Preparedness Scale (VPS-6), Healthcare Accommodations Scale (HAS-8), and Patient-Provider Communication Scale (PPCS-8) were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale (HHSE-21) had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-report versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions.
This is the author’s final version of a work that was accepted for publication in the journal Autism. Changes resulting from the publishing process, such as editing, corrections, formatting, and other quality control mechanisms may not be reflected in this document. The final, formatted version of this paper is available at https://doi.org/10.1177/1362361320967178
Nicolaidis, Christina; Zhen, Kelly; Lee, Junghee; Raymaker, Dora; Kapp, Steven K.; Croen, Lisa A.; Urbanowicz, Anna; Maslak, Joelle; and Scharer, Mirah L., "Psychometric Testing of Patient-Reported Instruments to Assess Healthcare Interventions for Autistic Adults" Autism (2020).