JMIR Publications

ABSTRACT

Background:

Cancer patients with an underlying autoimmune disease who are considering immune checkpoint inhibitors need to know about the benefits and risks of severe immune-related adverse events and flares of the autoimmune condition.

Objective:

We developed and tested the usability and acceptability of an educational website for these patients.

Methods:

Learning topics, images, and website architecture (including flow and requirements) were developed and iteratively reviewed by members of a community scientist program, a patient advisory group, and content experts. Usability was tested using Suitability Assessment of Materials, and acceptability was tested using the Ottawa Acceptability Measure.

Results:

The website included a home page, general information about immune checkpoint inhibitors, learning modules, general wellness information, a quiz, additional resources, and a glossary. Patient reviewers had rheumatoid arthritis, Crohn’s disease, Sjogren’s syndrome, or vasculitis. Health care provider reviewers were medical oncologists or rheumatologists. The median Suitability Assessment of Materials rating from patients was 75 (min 59, max 89 on a scale of 0-100; scores ≥70 indicate no substantial changes needed). Reviewers expressed that the website was acceptable, balanced in terms of discussion of benefits and harms, and helpful. Recommendations for improvement, mostly involving navigation and accessibility, were addressed.

Conclusions:

The newly developed website was acceptable for patients and could become a supporting tool to facilitate patient-physician discussion regarding immune checkpoint inhibitors.