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.
The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers, Journal of general internal medicine, NCBI PubMed PMID: 27271730, 2016 Jun 6.
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 %).
Respect the way I need to communicate with you: Healthcare experiences of adults on the autism spectrum, aaspire, April 16, 2015.
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.