Partnering With Autistic Adults to Improve Healthcare
This study is not yet open for participant recruitment.
Verified April 2012 by Oregon Health and Science University
Sponsor:
Oregon Health and Science University
Collaborators:
Syracuse University
Indiana University
Autistic Self Advocacy Network
Information provided by (Responsible Party):
Christina M. Nicolaidis, Oregon Health and Science University
ClinicalTrials.gov Identifier:
NCT01579669
First received: April 13, 2012
Last updated: April 16, 2012
Last verified: April 2012
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Purpose
The goal of this proposal is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs).
| Condition | Intervention |
|---|---|
|
Autism Spectrum Disorder |
Behavioral: Use of toolkit |
| Study Type: | Interventional |
| 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 |
Resource links provided by NLM:
Further study details as provided by Oregon Health and Science University:
Primary Outcome Measures:
- Patient satisfaction [ Time Frame: 0-7 days 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.
Secondary Outcome Measures:
- 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: 0-7 days after use of toolkit ] [ Designated as safety issue: No ]We will collect data on which toolkit componenents were accessed by patients, whether or not they completed the Autism Healthcare Accomodations 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.
| Estimated Enrollment: | 200 |
| Study Start Date: | August 2012 |
| Estimated Study Completion Date: | May 2013 |
| Estimated Primary Completion Date: | March 2013 (Final data collection date for primary outcome measure) |
| Arms | Assigned Interventions |
|---|---|
|
Experimental: 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.
|
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.
Eligibility| Ages Eligible for Study: | 18 Years and older |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
Criteria
Inclusion Criteria:
- Medical diagnosis of autism spectrum disorder (including autistic disorder, Asperger's disorder, and pervasive developmental disorder NOS) or score of 32 or higher on the Autism Quotient.
- Understands written or spoken English or has a support person available who understands written or spoken English
- Resident of the United States
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01579669
Contacts
| Contact: Christina Nicolaidis, MD, MPH | 503-494-9602 | nicolaid@ohsu.edu |
Locations
| United States, Oregon | |
| Oregon Health and Science University | Not yet recruiting |
| Portland, Oregon, United States, 97239 | |
| Principal Investigator: Christina Nicolaidis, MD, MPH | |
Sponsors and Collaborators
Oregon Health and Science University
Syracuse University
Indiana University
Autistic Self Advocacy Network
Investigators
| Principal Investigator: | Christina Nicolaidis, MD, MPH | Oregon Health and Science University |
More Information
Additional Information:
No publications provided
| Responsible Party: | Christina M. Nicolaidis, Associate Professor, Oregon Health and Science University |
| ClinicalTrials.gov Identifier: | NCT01579669 History of Changes |
| Other Study ID Numbers: | R34MH092503, R34MH092503 |
| Study First Received: | April 13, 2012 |
| Last Updated: | April 16, 2012 |
| Health Authority: | United States: Institutional Review Board United States: Federal Government |
Keywords provided by Oregon Health and Science University:
|
Autism Spectrum Disorder Primary Care Services Patient-Provider Communication Adults |
Additional relevant MeSH terms:
|
Autistic Disorder Child Development Disorders, Pervasive Mental Disorders Diagnosed in Childhood Mental Disorders |
ClinicalTrials.gov processed this record on May 16, 2013