International validation of two EORTC questionnaires for assessment of health‐related quality of life for patients with high‐grade non‐Hodgkin lymphoma (QLQ‐NHL‐HG29) and low‐grade non‐Hodgkin lymphoma (QLQ‐NHL‐LG20)

Abstract Background Health‐related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non‐Hodgkin‐lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high‐grade (HG)‐ and low‐grade (LG)‐NHL: the EORTC QLQ‐NHL‐HG29 and the EORTC QLQ‐NHL‐LG20 to supplement the core questionnaire (EORTC QLQ‐C30). Methods Overall, 768 patients with HG‐NHL ( N = 423) and LG‐NHL ( N = 345) from 12 countries completed the QLQ‐C30, QLQ‐NHL‐HG29/QLQ‐NHL‐LG20 and a debriefing questionnaire at baseline, and a subset at follow‐up for either retest ( N = 125/124) or responsiveness to change (RCA; N = 98/49). Results Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ‐NHL‐HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ‐NHL‐LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test–retest reliability, convergent validity, known‐group comparisons, and RCA find satisfactory results of both measures. A total of 31%–78% of patients with HG‐NHL and 22%–73% of patients with LG‐NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without. Discussion The use of the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision‐making. Plain language summary The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health‐related quality of life. The questionnaires are for patients with high‐grade or low‐grade non‐Hodgkin lymphoma. They are called the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.