Background Patients considering ICIs for their cancer who also have an underlying autoimmune disease need to be informed about the potential for flares of the autoimmune condition. We developed and tested the acceptability of an educational website designed to facilitate patient-doctor discussions.
Methods This study consisted of 3 phases: content creation, development of website, and user testing. The list of learning topics, images that were relevant to the educational content, and website architecture, flow, and requirements were developed and iteratively reviewed by community scientists, a patient advisory group, and content experts. After developing the prototype website, we asked 5 patients to test the site using the Suitability Assessment Measure. Data were analyzed with descriptive statistics and content analysis.
Results The website components included a home page with general information about ICIs (i.e., what immune checkpoints are, ICIs mechanism of action, types of ICIs); learning modules with 1) information about benefits of ICIs, 2) receipt of ICIs in the context of autoimmune disease, 3) possible side effects, and 4) what patients should expect before, during, and after treatment with ICIs; and additional information about potential impact in quality of life, exercise and daily activities, support groups, maintaining a healthy diet, and advise in creating list of questions to ask to their doctors. Participants were a median age of 60 years old, 3 were females, 2 had a diagnosis of rheumatoid arthritis, 1 Crohn’s disease, 1 Sjogren syndrome, and 1 granulomatosis. The median Suitability Assessment score was 75 (min 59, max 89 on a scale of 0–100). Participants agreed that the website was acceptable, balanced (benefits/harms ratio), and helpful. However, they were neutral about the length of information with users preferring more on ICIs infusions and probabilities of adverse events. Patients appreciated the medication overview and the glossary of terms used within the website. Recommendations for improvement mostly revolved around the navigation (e.g., adding a home page button, site map), accessibility (e.g., enlarging images, interactive activities), and adding functionalities (e.g., link to myChart for direct messaging to clinic).
Conclusions The newly developed website was acceptable for patients, and it has the potential to become a supporting tool to facilitate patient-doctor discussion regarding ICIs. A pilot study testing the feasibility of website use in clinical settings and its effectiveness in decreasing decisional conflict and improving knowledge regarding ICI is underway. Future work will be based on the strategies for adoption and implementation within the community.
Acknowledgements This study was supported by the National Cancer Institute (Project number: CA237619), The University of Texas MD Anderson’s Cancer Center Support Grant funded from NIH/NCI under award number P30CA016672 (using the Shared Decision Making Core), and the Rheumatology Research Foundation.
Ethics Approval The study protocol was reviewed and approved by the Institutional Review Board of The University of Texas MD Anderson Cancer Center (protocol # 2020–0035). Verbal consent was obtained from all participants before interviews. Data were securely stored as per institutional guidelines.
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