Partnering With Autistic Adults to Develop Tools to Improve Primary Healthcare
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Autism Spectrum Disorder
- Sponsor
- Oregon Health and Science University
- Enrollment
- 237
- Locations
- 1
- Primary Endpoint
- Patient Satisfaction
- Status
- Completed
- Last Updated
- 10 years ago
Overview
Brief Summary
The goal of this proposal is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs).
Detailed Description
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.
Investigators
Christina M. Nicolaidis
Associate Professor
Oregon Health and Science University
Eligibility Criteria
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
Outcomes
Primary Outcomes
Patient Satisfaction
Time Frame: 1 month after use of toolkit
Autistic participants completed an online survey about their satisfaction with the tool, including if they feel the tool is useful, how they think the tool will affect their healthcare, if and how they plan to use it with providers, and if they would recommend it to others.
Secondary Outcomes
- Provider Satisfaction(1-2 months after patient uses toolkit)
- Patient Use of Toolkit Components(1 month after use of toolkit)
- Change in Patient Satisfaction With Healthcare(before and 1 month after use of toolkit)
- Change in Patient's Perceived Barriers to Healthcare(Before and 1 month after use of toolkit)
- Change in Patient Healthcare Self-Efficacy(Before and 1 month after use of toolkit)