Clinical trial NCT01579669: Partnering With Autistic Adults to Improve Healthcare
Official title: Partnering With Autistic Adults to Develop Tools to Improve Primary Healthcare
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Autism Spectrum Disorder
Keywords: Autism Spectrum Disorder
Primary Care Services
Patient-Provider Communication
Adults
Lead sponsor: Oregon Health and Science University
Sponsor class: OTHER
Collaborators: name: National Institute of Mental Health (NIMH)
name: Syracuse University
name: Indiana University
name: Autistic Self Advocacy Network
name: Portland State University
First posted: 2012-04-18
Enrollment: 237
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: HEALTH_SERVICES_RESEARCH

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.

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

Primary outcomes:
measure: Patient Satisfaction
timeFrame: 1 month after use of toolkit
Secondary outcomes:
measure: Provider Satisfaction
timeFrame: 1-2 months after patient uses toolkit
measure: Patient Use of Toolkit Components
timeFrame: 1 month after use of toolkit
measure: Change in Patient Satisfaction With Healthcare
timeFrame: before and 1 month after use of toolkit
measure: Change in Patient's Perceived Barriers to Healthcare
timeFrame: Before and 1 month after use of toolkit
measure: Change in Patient Healthcare Self-Efficacy
timeFrame: Before and 1 month after use of toolkit
Other outcomes:
Locations:
city: Portland
country: United States
facility: Oregon Health and Science University
state: Oregon
Study officials:
affiliation: Oregon Health and Science University
name: Christina Nicolaidis, MD, MPH
role: PRINCIPAL_INVESTIGATOR
References:
citation: Nicolaidis C, Raymaker D, McDonald K, Kapp S, Weiner M, Ashkenazy E, Gerrity M, Kripke C, Platt L, Baggs A. The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. J Gen Intern Med. 2016 Oct;31(10):1180-9. doi: 10.1007/s11606-016-3763-6. Epub 2016 Jun 6.