Partnering With Autistic Adults to Improve Healthcare
The goal of this proposal is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs).
|Study Design:||Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Health Services Research
|Official Title:||Partnering With Autistic Adults to Develop Tools to Improve Primary Healthcare|
- Patient satisfaction [ Time Frame: 1 month after use of toolkit ] [ Designated as safety issue: No ]Participants will complete 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.
- Provider satisfaction [ Time Frame: 1-2 months after patient uses toolkit ] [ Designated as safety issue: No ]Providers will participate in a telephone interview to assess satisfaction with the toolkit. Items will address overall satisfaction, how much they feel the tools have or will impact patient care, and if they would or would not use the tools with other patients or recommend the tools to other providers.
- Patient use of toolkit components [ Time Frame: 1 month after use of toolkit ] [ Designated as safety issue: No ]We will collect data on which toolkit components were accessed by patients, whether or not they completed the Autism Healthcare Accommodations Tool (AHAT) survey, and whether or not they allowed the research team to send a copy of the report to their primary care provider.
- Provider use of toolkit components [ Time Frame: 1-2 months after patient use of toolkit ] [ Designated as safety issue: No ]We will collect process measures on provider's use of the toolkit, including if they read the report, if they scheduled an appointment with the patient, if they went to the website, and which components on the website they accessed.
- Change in patient satisfaction with healthcare [ Time Frame: before and 1 month after use of toolkit ] [ Designated as safety issue: No ]Patients will complete a 9-item instrument assessing satisfaction with their primary healthcare experiences. We will compare responses obtained before using the toolkit with those obtained 1 month later.
- Change in patient's perceived barriers to healthcare [ Time Frame: Before and 1 month after use of toolkit ] [ Designated as safety issue: No ]Patient participants will be presented with a list of 16 barriers to healthcare and asked which ones keep them from obtaining good care. We will compare responses from the survey completed before use of the toolkit and the one completed 1 month later.
- Change in Patient Healthcare Self-Efficacy [ Time Frame: Before and 1 month after use of toolkit ] [ Designated as safety issue: No ]Patient participants will complete a 21-item healthcare self-efficacy scale before and 1 month after use of the toolkit.
|Study Start Date:||September 2013|
|Study Completion Date:||August 2014|
|Primary Completion Date:||August 2014 (Final data collection date for primary outcome measure)|
Experimental: Use of Toolkit
All participants will have access to the toolkit
Behavioral: Use of toolkit
Patient participants will be given access to the toolkit and will create a customized report for their provider. Team will send report to providers and ask them to schedule appointment with patient to discuss.
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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT01579669
|United States, Oregon|
|Oregon Health and Science University|
|Portland, Oregon, United States, 97239|
|Principal Investigator:||Christina Nicolaidis, MD, MPH||Oregon Health and Science University|