Dataset Information

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

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.

SUBMITTER: Nicolaidis C

PROVIDER: S-EPMC5023610 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

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Publications

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

Nicolaidis Christina C Raymaker Dora D McDonald Katherine K Kapp Steven S Weiner Michael M Ashkenazy Elesia E Gerrity Martha M Kripke Clarissa C Platt Laura L Baggs Amelia A

Journal of general internal medicine 20160606 10

<h4>Background</h4>The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.<h4>Objective</h4>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.<h4>Design</h4>Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.<h4>Participants</h4>A ...[more]

PMID: 27271730

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Dataset Information

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

Background

Objective

Design

Participants

Interventions

Main measures

Key results

Conclusions

Publications

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

Similar Datasets

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