Capsule Commentary on Nicolaidis et al., The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

Excerpt

Autism is usually diagnosed and managed in childhood, but it is a lifetime condition, and as autistic children age they find that resources and services for autistic adults are rare and providers are ill-trained to care for them.1 Autistic adults have unique barriers to healthcare; even making an appointment and getting to their doctor’s office can be overwhelming. Into this void, these researchers used a community-based participatory research (CBPR) approach to develop an online toolkit for autistic adults and their providers.2 This report describes the process of developing and evaluating the material included in the toolkit. They found that the tools were reliable and valid and that autistic patients and their providers found the kit easy to use. In the field, the toolkit reduced patient perceptions of care barriers and improved healthcare self-efficacy (slightly) and patient satisfaction. Providers reported the information to be very (52%) or somewhat (43%) useful. These outcomes are limited by being based on surveys; no data were collected to determine whether autistic adults received higher quality healthcare or had an improved ability to navigate the healthcare system. …