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J Gen Intern Med. 2016 Oct;31(10):1180-9. doi: 10.1007/s11606-016-3763-6. Epub 2016 Jun 6.

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

Author information

1
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA. Nicol22@pdx.edu.
2
Department of Medicine and School of Public Health, Oregon Health & Science University, Portland, OR, USA. Nicol22@pdx.edu.
3
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA. Nicol22@pdx.edu.
4
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA.
5
Academic Autism Spectrum Partnership in Research and Education, Portland, OR, USA.
6
Department of Public Health, Food Studies and Nutrition, Burton Blatt Institute, Syracuse University, Syracuse, NY, USA.
7
Indiana University Center for Health Services and Outcomes Research, Indianapolis, IN, USA.
8
Regenstrief Institute, Inc., Indianapolis, IN, USA.
9
Center for Health Information and Communication, Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service CIN 13-416, Richard L. Roudebush VA Medical Center, Indianapolis, IN, USA.
10
Department of Medicine and School of Public Health, Oregon Health & Science University, Portland, OR, USA.
11
Veterans Affairs Portland Health Care System, Portland, OR, USA.
12
Department of Family and Community Medicine, University of California, San Francisco, San Francisco, CA, USA.
13
School of Medicine, Duke University, Durham, NC, USA.

Abstract

BACKGROUND:

The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.

OBJECTIVE:

Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.

DESIGN:

Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.

PARTICIPANTS:

A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.

INTERVENTIONS:

The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers.

MAIN MEASURES:

Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions.

KEY RESULTS:

Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %).

CONCLUSIONS:

The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

TRIAL REGISTRATION:

ClinicalTrials.gov NCT01579669.

KEYWORDS:

adults; autism; community-based participatory research; healthcare interactions; primary care

PMID:
27271730
PMCID:
PMC5023610
DOI:
10.1007/s11606-016-3763-6
[Indexed for MEDLINE]
Free PMC Article

Conflict of interest statement

Compliance with Ethical Standards Funding This study was funded by the National Institute of Mental Health (R34MH092503). Prior Presentations Portions of this paper were presented at the 2015 TASH conference in Portland, OR, December 2015. Conflict of Interest The authors declare that they have no conflict of interest. Note We understand that language describing autism spectrum disorders is controversial, and we respect the many valid opinions on this issue. We choose to use identity-first language (e.g. autistic adult) instead of person-first language (e.g. person with autism) due to the preferences of the autistic self-advocacy community.25.

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