Background/Purpose: Immune checkpoint inhibitors (ICI) have been extremely successful in the treatment of various malignancies. Patients with pre-existing autoimmune disorders and cancer are at risk of developing immune-related adverse events (irAEs) and flares of their underlying disease when treated with ICI, so harms and benefits must be weighed and discussed. We conducted a patient assessment of learning needs that could enhance their decision-making on the potential use of ICI.

Methods: We individually interviewed 26 patients with cancer and concomitant autoimmune disease of whom 20 had received ICI, and 6 were candidates to receive ICI. We used a semi-structured guide to explore patient health information needs, communication issues with providers, preferred delivery methods and format for learning tools.

Results: Fifty-three percent of the patients were female, median age was 62.9 (±10.9). They had rheumatoid arthritis (47.4%), psoriasis (26.3%), Crohn’s disease (10.5%), ankylosing spondylitis (5.3%), systemic lupus erythematosus (5.3%), or ulcerative colitis (5.3%). Half of the patients (52.6%) had a demonstrable disease activity of the autoimmune disease at the time of making the decision on whether to start ICI. Most (84%) of the patients had melanoma, and at the time of the interview 68.4% had completed or discontinued the ICI. Identified health information needs included: 1) information on irAEs and flares of the autoimmune condition, 2) benefits of ICI, 3) ICI mechanism of action in the context of the autoimmune disease, 4) management for flare-ups, 5) possible reasons for stopping or modifying treatment (for cancer or autoimmune disease), 6) likelihood of autoimmune disease progression or organ damage, and 7) lifestyle changes that can be incorporated to help avoiding irAEs. The needs reported by both patients who had received ICI and those who had not yet received treatment were similar with the exception of more patients who had received ICI having more questions about cancer treatment modifications. Regarding communication with providers, patients expressed the need to better understand when to contact the provider and how to share information with other providers who were managing comorbid conditions. All patients agreed that reliable information was best delivered by their oncology provider and wished to be well-informed prior to treatment. In addition, more than half of the patients (56%) wanted information delivered in different formats. They were enthusiastic about the idea of having videos, a web application, or written information with drawings and graphs delivered through the electronic health record with links to review at home, at their own pace.

Conclusion: Patients identified several areas of health information that could help in decision-making about therapy with ICI and also highlighted the importance for communication between their various providers. Finally, they expressed interest in having educational tools that could be reviewed from their physicians to help with the final decision-making.

Disclosure Statement: This study was funded by the Rheumatology Research Foundation and the National Cancer Institute (CA237619).

« Back to ACR Convergence 2022

ACR Meeting Abstracts - https://acrabstracts.org/abstract/learning-needs-assessment-for-patients-with-cancer-and-a-pre-existing-autoimmune-disease-who-are-candidates-to-receive-immune-checkpoint-inhibitors/