Trial Outcomes & Findings for Partnering With Autistic Adults to Improve Healthcare (NCT NCT01579669)
NCT ID: NCT01579669
Last Updated: 2015-12-07
Results Overview
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.
COMPLETED
NA
237 participants
1 month after use of toolkit
2015-12-07
Participant Flow
We recruited autistic adults via fliers, postings, and announcements targeted to autism and disability-related list-serves, organizations, and forums. We invited the autistic adult's primary care providers (PCPs) to participate if the patient gave permission for us to contact their provider and provided usable contact information.
The total number of participants enrolled includes everyone who consented to participate. Some participants clicked "yes" to the online consent, but did not participate in the initial survey. The number of participants noted as Started in the Participant Flow module includes only those that took the initial survey.
Participant milestones
| Measure |
Autistic Adults
Adults on the autism spectrum
|
Primary Care Providers
Participants' primary care providers
|
|---|---|---|
|
Overall Study
STARTED
|
170
|
41
|
|
Overall Study
COMPLETED
|
134
|
41
|
|
Overall Study
NOT COMPLETED
|
36
|
0
|
Reasons for withdrawal
Withdrawal data not reported
Baseline Characteristics
Partnering With Autistic Adults to Improve Healthcare
Baseline characteristics by cohort
| Measure |
Autistic Adults
n=170 Participants
Adults on the autism spectrum
|
Primary Care Providers
n=41 Participants
Primary care providers taking care of autistic adults participating in this study
|
Total
n=211 Participants
Total of all reporting groups
|
|---|---|---|---|
|
Age, Continuous
|
36.5 years
n=5 Participants
|
36.3 years
n=7 Participants
|
36.4 years
n=5 Participants
|
|
Sex/Gender, Customized
Male
|
75 participants
n=5 Participants
|
15 participants
n=7 Participants
|
90 participants
n=5 Participants
|
|
Sex/Gender, Customized
Female
|
91 participants
n=5 Participants
|
25 participants
n=7 Participants
|
116 participants
n=5 Participants
|
|
Sex/Gender, Customized
Other
|
4 participants
n=5 Participants
|
0 participants
n=7 Participants
|
4 participants
n=5 Participants
|
|
Sex/Gender, Customized
Not Reported
|
0 participants
n=5 Participants
|
1 participants
n=7 Participants
|
1 participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
11 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
12 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
158 Participants
n=5 Participants
|
36 Participants
n=7 Participants
|
194 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
1 Participants
n=5 Participants
|
4 Participants
n=7 Participants
|
5 Participants
n=5 Participants
|
|
Race (NIH/OMB)
American Indian or Alaska Native
|
2 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
2 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Asian
|
2 Participants
n=5 Participants
|
3 Participants
n=7 Participants
|
5 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Black or African American
|
5 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
6 Participants
n=5 Participants
|
|
Race (NIH/OMB)
White
|
152 Participants
n=5 Participants
|
29 Participants
n=7 Participants
|
181 Participants
n=5 Participants
|
|
Race (NIH/OMB)
More than one race
|
5 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
7 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Unknown or Not Reported
|
4 Participants
n=5 Participants
|
6 Participants
n=7 Participants
|
10 Participants
n=5 Participants
|
|
Region of Enrollment
United States
|
170 participants
n=5 Participants
|
41 participants
n=7 Participants
|
211 participants
n=5 Participants
|
PRIMARY outcome
Timeframe: 1 month after use of toolkitAutistic 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.
Outcome measures
| Measure |
Autistic Adults
n=134 Participants
Adults on the autism spectrum
|
|---|---|
|
Patient Satisfaction
Percentage rating toolkit as useful
|
95.08 percentage of participants
|
|
Patient Satisfaction
Percentage who felt toolkit was easy to use
|
95.96 percentage of participants
|
|
Patient Satisfaction
Percentage who felt toolkit was important
|
96.8 percentage of participants
|
|
Patient Satisfaction
Percentage who would recommend toolkit to friend
|
92.11 percentage of participants
|
|
Patient Satisfaction
Percentage who would recommend toolkit to provider
|
94.87 percentage of participants
|
SECONDARY outcome
Timeframe: 1-2 months after patient uses toolkitPopulation: Participants' primary care providers. Primary care providers were included in the study to assess their impression of the toolkit, but all other outcomes (e.g. change in barriers, self-efficacy, or satisfaction with healthcare) only apply to the autistic participants, not their primary care providers.
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.
Outcome measures
| Measure |
Autistic Adults
n=41 Participants
Adults on the autism spectrum
|
|---|---|
|
Provider Satisfaction
Proportion rating AHAT as moderately or very usefu
|
82.05 percentage of PCPs
|
|
Provider Satisfaction
Proportion who would recommend AHAT to patients
|
86.49 percentage of PCPs
|
SECONDARY outcome
Timeframe: 1 month after use of toolkitWe 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.
Outcome measures
| Measure |
Autistic Adults
n=170 Participants
Adults on the autism spectrum
|
|---|---|
|
Patient Use of Toolkit Components
Proportion completing AHAT
|
96.00 percentage of participants
|
|
Patient Use of Toolkit Components
Proportion who requested AHAT be sent to provider
|
57.74 percentage of participants
|
SECONDARY outcome
Timeframe: before and 1 month after use of toolkitPopulation: Autistic adults who participated directly (not via a proxy) and who saw their provider in the 1 month between when they participated in the baseline assessment and they completed the post-intervention survey.
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.
Outcome measures
| Measure |
Autistic Adults
n=43 Participants
Adults on the autism spectrum
|
|---|---|
|
Change in Patient Satisfaction With Healthcare
Baseline Satisfaction
|
30.91 units on a scale
Standard Error 0.978
|
|
Change in Patient Satisfaction With Healthcare
Post-intervention satisfaction
|
32.63 units on a scale
Standard Error 1.01
|
SECONDARY outcome
Timeframe: Before and 1 month after use of toolkitPopulation: Participants completing the pre and post-test themselves (not via a supporter).
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.
Outcome measures
| Measure |
Autistic Adults
n=108 Participants
Adults on the autism spectrum
|
|---|---|
|
Change in Patient's Perceived Barriers to Healthcare
Mean number of barriers at baseline
|
4.07 number of barriers
Standard Error 0.25
|
|
Change in Patient's Perceived Barriers to Healthcare
Mean number of barriers at follow-up
|
2.82 number of barriers
Standard Error 0.19
|
SECONDARY outcome
Timeframe: Before and 1 month after use of toolkitPopulation: Participants completing pre- and post-intervention survey themselves (not via a supporter), who had complete data on the self-efficacy scales on both surveys.
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.
Outcome measures
| Measure |
Autistic Adults
n=98 Participants
Adults on the autism spectrum
|
|---|---|
|
Change in Patient Healthcare Self-Efficacy
Baseline healthcare self-efficacy score
|
37.92 units on a scale
Standard Error 1.21
|
|
Change in Patient Healthcare Self-Efficacy
Follow-up healthcare self-efficacy score
|
39.37 units on a scale
Standard Error 1.19
|
Adverse Events
Autistic Adults
Primary Care Providers
Serious adverse events
Adverse event data not reported
Other adverse events
Adverse event data not reported
Additional Information
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place