Patient Perspectives on Non-Hodgkin Lymphoma: A Qualitative Study to Guide Selection of Clinical Trial Endpoints

The literature on the qualitative experiences of patients with non-Hodgkin lymphoma (NHL) is limited. Qualitative interviews were conducted to investigate participants' experiences with two types of NHL (diffuse large B-cell lymphoma [n = 20] and mantle cell lymphoma [n = 10]) and evaluate the comprehensiveness of patient-reported outcome (PRO) measures. Fatigue, tiredness, body aches, night sweats, lethargy, headache, appetite loss, altered taste, and weakness were the most frequent and bothersome symptoms. Key impacts were decreased physical performance, restricted activity, sadness, distress, fear of recurrence, and worry about future. Most participants expressed positive opinions about the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) (n = 22/28), EORTC QLQ-NHL-High Grade Module 29 (EORTC QLQ-NHL-HG29) (n = 12/16), EORTC QLQ-NHL-Low Grade Module 20 (EORTC QLQ-NHL-LG20) (n = 8/12), and Functional Assessment of Cancer Therapy-Lymphoma (FACT-Lym) (n = 10/14), considering them relevant to their experiences (22/27, 13/15, 9/13, and 10/12, respectively). All measures adequately captured their experiences with NHL (QLQ-C30: n = 26/26, NHL-HG29: n = 14/14, NHL-LG20: n = 11/11, and FACT-Lym: n = 12/13). These findings provide a valuable framework for informing the selection of appropriate PRO measures in NHL clinical trials and identifying potentially meaningful trial endpoints.