Partnering With Autistic Adults to Improve Healthcare

This study has been completed.
Sponsor:
Collaborators:
National Institute of Mental Health (NIMH)
Syracuse University
Indiana University
Autistic Self Advocacy Network
Portland State University
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 30, 2015
Last verified: October 2015

April 13, 2012
October 30, 2015
September 2013
August 2014   (final data collection date for primary outcome measure)
Patient Satisfaction [ Time Frame: 1 month after use of toolkit ] [ Designated as safety issue: No ]
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.
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.
Complete list of historical versions of study NCT01579669 on ClinicalTrials.gov Archive Site
  • Provider Satisfaction [ Time Frame: 1-2 months after patient uses toolkit ] [ Designated as safety issue: No ]
    Providers participated in a brief survey to assess satisfaction with the toolkit. Items addressed overall satisfaction and if they would or would not use the tools with other patients.
  • Patient Use of Toolkit Components [ Time Frame: 1 month after use of toolkit ] [ Designated as safety issue: No ]
    We collected data on whether or not participants 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.
  • Change in Patient Satisfaction With Healthcare [ Time Frame: before and 1 month after use of toolkit ] [ Designated as safety issue: No ]
    Patients completed an 8-item instrument assessing satisfaction with their primary healthcare experiences. The scale was previously adapted from the 2007 Health Information National Trends Survey (HINTS). In the pre-intervention survey autistic participants were asked to think about their last visit with their primary care provider. We did not assess patient-provider communication for those who were participating via a proxy as we did not feel that a proxy could adequately rate how satisfied the patient was with communication. Only autistic participants who said they had seen their PCP since using the healthcare toolkit were re-asked these items in the post-intervention survey. Responses used a 5-point Likert scale with anchors of "1 - Strongly Disagree" to "5 - Strongly Agree". We analyzed items by summing the responses into a composite score (range 8-40; higher scores indicate higher satisfaction). Cronbach's alpha = 0.92.
  • Change in Patient's Perceived Barriers to Healthcare [ Time Frame: Before and 1 month after use of toolkit ] [ Designated as safety issue: No ]
    Autistic participants were presented with a list of 16 barriers to healthcare and asked which ones keep them from obtaining good care. We compared the total number of barriers endorsed by participants in the pre- and post-intervention surveys. The proxy version of the survey included a few modified items to differentiate between barriers faced by the autistic individuals and those faced by the supporter. Due to differences in the wording, we could not combine results from those who participated directly with those who participated by proxy. Only data from autistic adults who participated directly is shown.
  • Change in Patient Healthcare Self-Efficacy [ Time Frame: Before and 1 month after use of toolkit ] [ Designated as safety issue: No ]
    Autistic participants completed a 21-item healthcare self-efficacy scale before and 1 month after use of the toolkit. The scale was created de novo for this study, based on our prior qualitative work. Items addressed aspects related to healthcare navigation (e.g. "How confident are you that you can make an appointment with your healthcare provider when needed?"), successful interactions with providers, (e.g. "How confident are you that you can describe your symptoms or healthcare concerns to your provider?"), and self-management (e.g. "How confident are you that you can take medications the way you are supposed to take them?"). Response options used a 4-point Likert scale with anchors of "0 - Not at all confident" to "3 - Totally confident". We scored self-efficacy by adding responses from the 21 items, resulting in a possible range of 0 to 63, with higher scores corresponding to higher self-efficacy. Cronbach's alpha was 0.92.
  • 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.
Not Provided
Not Provided
 
Partnering With Autistic Adults to Improve Healthcare
Partnering With Autistic Adults to Develop Tools to Improve Primary Healthcare
The goal of this proposal is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs).
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.
Interventional
Not Provided
Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Health Services Research
Autism Spectrum Disorder
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.
Experimental: Use of Toolkit
All participants will have access to the toolkit
Intervention: Behavioral: Use of toolkit
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Completed
237
August 2014
August 2014   (final data collection date for primary outcome measure)

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
Both
18 Years and older   (Adult, Senior)
No
Contact information is only displayed when the study is recruiting subjects
United States
 
NCT01579669
R34MH092503, R34MH092503
No
Not Provided
Not Provided
Christina M. Nicolaidis, Oregon Health and Science University
Oregon Health and Science University
  • National Institute of Mental Health (NIMH)
  • Syracuse University
  • Indiana University
  • Autistic Self Advocacy Network
  • Portland State University
Principal Investigator: Christina Nicolaidis, MD, MPH Oregon Health and Science University
Oregon Health and Science University
October 2015

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP