Pilot Project Abstract - Nicolaidis, Christina, MD, MPH

Nicolaidis, Christina, MD, MPH, Associate Professor, Dept. of General Internal Medicine, OHSU

“Community Based Participatory Research to Improve the Health Care of Autistic Adults”

Using a CBPR approach, we will partner with autistic adults to conduct a mixed methods study on autism-specific barriers and facilitators to quality primary care services for adults on the autistic spectrum.

There is reason to believe that, like people with other disabilities, autistic adults face significant disparities in health and healthcare. Moreover, the core features of autism – namely impairments in communication, social interaction, and focused interests – may create autism-specific barriers. However, few studies have specifically addressed these important issues. We plan to apply for NIMH R01 funding to conduct a large prospective study on healthcare access and quality for autistic adults. The goals of this proposal are to translate traditional health services methods for use with autistic adults and to collect important preliminary data that will be needed to obtain NIH funding. We will use a community-based participatory research (CBPR) approach to conduct a mixed-methods (survey and qualitative interview) study with the following specific aims: 1) to adapt standard healthcare service instruments so they can be effectively used in an Internet-based study that will describe the healthcare characteristics of autistic adults that use the Internet; 2) to compare healthcare access and quality between three groups of Internet users: autistic adults, adults with other disabilities, and adults without disabilities; 3) to identify barriers and facilitators to care that may be unique to autistic adults, as compared to adults with other disabilities; and 4) to use qualitative data to obtain a more in-depth understanding of barriers and facilitators to quality healthcare for autistic adults. Our multi-disciplinary team includes experts in autism, disability, and health services research. Autistic community partners serve as equal partners, ensuring that methods are practical, accessible, safe, effective and ethical.