Partnering With Autistic Adults to Improve Healthcare



Status:Completed
Conditions:Neurology, Psychiatric, Autism
Therapuetic Areas:Neurology, Psychiatry / Psychology
Healthy:No
Age Range:18 - Any
Updated:4/21/2016
Start Date:September 2013
End Date:August 2014

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Partnering With Autistic Adults to Develop Tools to Improve Primary Healthcare

The goal of this proposal is to develop and evaluate patient-centered care tools for
autistic adults and their primary care providers (PCPs).

The goal of this study is to develop and evaluate patient-centered care tools for autistic
adults and their primary care providers (PCPs). One tool will allow autistic adults and/or
their supporters to provide individualized information to PCPs about how being on the
spectrum affects their healthcare and possible strategies to facilitate quality care.
Another tool will capitalize on the power of patient narrative to educate PCPs about autism.
These tools and other resources will be housed on an interactive website for autistic
adults, supporters, and PCPs. The research team will evaluate the feasibility and
acceptability of using the new web-based patient-centered care tools with autistic adults
and their primary care providers. This study will provide data for a future trial testing
the effectiveness of these tools in improving the health of autistic adults by increasing
patient-centered care and patient activation.

Inclusion Criteria:

- Medical diagnosis of autism spectrum disorder (including autistic disorder,
Asperger's disorder, Childhood Disintegrative Disorder, and pervasive developmental
disorder NOS)

- Understands written or spoken English or has a support person available who
understands written or spoken English

- Has a primary care provider

Exclusion Criteria:

- Is not a resident of the United States
We found this trial at
1
site
3181 Southwest Sam Jackson Park Road
Portland, Oregon 97239
503 494-8311
Oregon Health and Science University In 1887, the inaugural class of the University of Oregon...
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mi
from
Portland, OR
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