Partnering With Autistic Adults to Improve Healthcare

This study is not yet open for participant recruitment.
Verified October 2013 by Oregon Health and Science University
Sponsor:
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: October 8, 2013
Last verified: October 2013
  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: 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.


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: 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.


Estimated Enrollment: 200
Study Start Date: August 2013
Estimated Study Completion Date: December 2013
Estimated Primary Completion Date: November 2013 (Final data collection date for primary outcome measure)
Arms Assigned Interventions
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.

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, 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
  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 Recruiting
Portland, Oregon, United States, 97239
Contact: Christina Nicolaidis, MD, MPH    503-725-9603    nicolaid@ohsu.edu   
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: October 8, 2013
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 April 21, 2014