Immune checkpoint inhibitor-induced inflammatory arthritis: a qualitative study identifying unmet patient needs and care gaps

BACKGROUND: Patients treated for cancer with immune checkpoint inhibitors (ICI) may develop autoimmune adverse events, including ICI-induced inflammatory arthritis (IA). ICI-induced IA treatment requires balancing immune activation to fight cancer and immune modulation to control autoimmunity. Our objective was to learn how patients experience ICI-induced IA and potentially conflicting treatment decisions. METHODS: Semi-structured interviews were conducted with participants with rheumatologist-diagnosed ICI-induced IA recruited from a longitudinal cohort. The interview guide probed the experience of diagnosis and treatment, symptoms and impact of ICI-induced IA, coping mechanisms, and treatment decision-making. Two researchers used an iterative coding process to identify themes through inductive thematic analysis and consensus. An overarching conceptual framework was derived from the qualitative analysis to identify care gaps perceived by patients, and inform future research. RESULTS: Fourteen patients with ICI-induced IA participated in semi-structured interviews. Five overarching themes were identified: an awareness gap leading to delay in diagnosis of IA, descriptors of ICI-induced IA and relationship to other adverse events, emotional and quality-of-life impact of IA, fear and decision-making, and contextual factors including social support. CONCLUSIONS: As reported by patients, ICI-induced IA had a significant functional and emotional impact, even as compared to cancer and other ICI-induced side effects. Increasing awareness and integrated care of ICI-induced IA, and increasing social support are key targets for improving patient care. Additionally, more data on cancer outcomes in patients requiring immunomodulation for ICI-induced IA would help address fear and uncertainty for patients, and better support them through therapeutic decisions.