Update of the EORTC Multiple Myeloma module (QLQ-MY20): Results from qualitative interviews with patients and healthcare professionals

Abstract The European Organisation for the Research and Treatment of Cancer Myeloma module (EORTC QLQ-MY20) assesses health-related quality of life in patients with multiple myeloma (MM). Treatment advances and increased survival rates prompted the conduct of the assessment of the content validity of the QLQ-MY20 and inform modification. Two literature reviews were conducted to generate a list of MM issues and review measurement properties. Patients (n = 93) and healthcare professionals (n = 20), largely across Europe, were interviewed to assess the relevance/importance and identify any missing issues from the list, (inclusive of original MY20 issues). Pre-specified criteria were used to retain important/relevant issues specific to MM and/or MM treatment. A conceptual framework was developed based on the elicited issues. The resulting conceptual framework for 24 provisional items included domains of pain, neuropathy, infection, edema, tiredness, weight loss, ocular, oral, restlessness/agitation, and hair loss. Eleven items assessed issues captured by the original QLQ-MY20. New items aim to capture the current MM disease experience including side effects of novel MM therapies. Preliminary evaluation of psychometric properties and international validation field testing of the proposed 24 item module is planned following debriefing interviews with MM patients to identify/rectify potential problems in administration and to identify missing/redundant concepts.