International validation of the EORTC QLQ‐CLL17 questionnaire for assessment of health‐related quality of life for patients with chronic lymphocytic leukaemia

Abstract

Summary Selecting the most appropriate chronic lymphocytic leukaemia (CLL) treatment is challenging. Patient‐reported health‐related quality of life (HRQoL) is therefore a critical aspect to consider. This international study by the European Organization for Research and Treatment of Cancer (EORTC) tested the psychometric properties of a newly developed measure for CLL patients: the EORTC QLQ‐CLL17 to supplement the core questionnaire (EORTC QLQ‐C30). Patients with CLL (n = 341) from 12 countries completed the QLQ‐C30, QLQ‐CLL17 and a debriefing questionnaire. Sociodemographic and clinical data were recorded from medical records. A high percentage (30%–66%) reported symptoms and/or worries (e.g. aches/pains in muscles, lack of energy and worry/fears about health). Confirmatory factor analysis showed an acceptable to good fit of the 17 items on the three scales (i.e. symptom burden, physical condition/fatigue and worries/fears about health and functioning). Completion took on average 8 min. Test–retest and convergent validity was demonstrated. The QLQ‐CLL17 differentiated between patients with an Eastern Cooperative Oncology group (ECOG) performance of 0 versus 1–3 (p's < 0.01 and clinically relevant). The newly developed EORTC QLQ‐CLL17 will increase sensitivity of HRQoL assessment in patients with CLL. Implementation of this questionnaire both in clinical research and practice will help to generate unique clinically relevant data to better inform CLL treatment decision‐making.

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)

“…It impacts their HRQOL and functioning negatively and increases use of health services 26‐28 . Importantly, the HG‐ and LG‐NHL survivors who had completed treatment more than 3 months ago and patients with LG‐NHL who were not actively treated reported worries about health and functioning, which has been observed previously in patients with CLL, another indolent lymphoid cancer 24 . These findings have important implications for patient‐tailored care, encouraging health care providers to actively address and deal with patients worries and fears.…”

“…[26][27][28] Importantly, the HG-and LG-NHL survivors who had completed treatment more than 3 months ago and patients with LG-NHL who were not actively treated reported worries about health and functioning, which has been observed previously in patients with CLL, another indolent lymphoid cancer. 24 These findings have important implications for patient-tailored care, encouraging health care providers to actively address and deal with patients worries and fears. For patients with severe worries, referral to psycho-oncology staff for supportive care has been shown to be effective.…”

“…Analyses of covariance were performed to compare the mean QLQ‐C30 scales for functioning and global health status/HRQOL between patients with or without six selected key symptoms/worries adjusted for sex and age. The percentage of patients who reported symptoms and worries on the QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20 was based on the number of patients who answered, “a little,” “quite a bit,” or “very much” on a certain item 24 . The evidence‐based guideline for interpretation of the QLQ‐C30 was used to determine clinically relevant differences between groups 25 …”

“…The percentage of patients who reported symptoms and worries on the QLQ-NHL-HG29 and QLQ-NHL-LG20 was based on the number of patients who answered, "a little," "quite a bit," or "very much" on a certain item. 24 The evidence-based guideline for interpretation of the QLQ-C30 was used to determine clinically relevant differences between groups. 25…”

Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry

“…However, patient feedback highlighted the onerous nature of these questionnaires, emphasising the need for dedicated patient reported outcome tools that yield meaningful data. The failure of these general questions to detect meaningful issues suggests the need for the development of WM disease‐specific PROMs, as has been recently developed in other haematological malignancies, including chronic lymphocytic leukaemia [ 12 ] and chronic myeloid leukaemia [ 13 ].…”