Quality of life of patients with chronic lymphocytic leukaemia in the Netherlands: results of a longitudinal multicentre study

Abstract

PurposeTo describe the health-related quality of life (HRQoL) of an unselected population of patients with chronic lymphocytic leukaemia (CLL) including untreated patients.MethodsHRQoL was measured by the EORTC QLQ-C30 including the CLL16 module, EQ-5D, and VAS in an observational study over multiple years. All HRQoL measurements per patient were connected and analysed using area under the curve analysis over the entire study duration. The total patient group was compared with the general population, and three groups of CLL patients were described separately, i.e. patients without any active treatment (“watch and wait”), chlorambucil treatment only, and patients with other treatment(s).ResultsHRQoL in the total group of CLL patients was compromised when compared with age- and gender-matched norm scores of the general population. CLL patients scored statistically worse on the VAS and utility score of the EQ-5D, all functioning scales of the EORTC QLQ-C30, and the symptoms of fatigue, dyspnoea, sleeping disturbance, appetite loss, and financial difficulties. In untreated patients, the HRQoL was slightly reduced. In all treatment stages, HRQoL was compromised considerably. Patients treated with chlorambucil only scored worse on the EORTC QLQ-C30 than patients who were treated with other treatments with regard to emotional functioning, cognitive functioning, bruises, uncomfortable stomach, and apathy.ConclusionsCLL patients differ most from the general population on role functioning, fatigue, concerns about future health, and having not enough energy. Once treatment is indicated, HRQoL becomes considerably compromised. This applies to all treatments, including chlorambucil, which is considered to be a mild treatment.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-015-1039-y) contains supplementary material, which is available to authorized users.

The burden of common skin diseases assessed with the EQ5D™: a European multicentre study in 13 countries

“…13,14 Leg ulcers, HS, blistering diseases and prurigo had the lowest means (< 60) similar to rheumatoid arthritis pain (56Á4), 15 cardiovascular disease (37- 89), 16,17 cancer (48Á0-84Á0), 16,18 liver disease (57-70) 16 and chronic obstructive pulmonary disease (COPD; 54Á7-58Á8). 19 The impairment in mean self-reported health for other chronic skin diseases (psoriasis, atopic eczema, pruritus, hand eczema, connective tissue disease and genital conditions) showed mean values < 70, similar to diabetes mellitus (68Á8), 20 cardiovascular disease (37-89), 16,17 anxiety (63Á8), 21 cancers (48Á0-84Á0), 16,18 liver disease (57-70), 16 chronic lymphocytic leukaemia (CLL; 70Á3-77Á6) 22 and visual impairment (64Á0-82Á0). 16 As comorbidity was adjusted for, the data indicate how skin disease alone impairs self-reported health.…”

“…The impairment for several skin conditions is similar to the reduced HRQoL caused by diabetes mellitus, 20 cardiovascular disease, 16,17 COPD, 19 arthritis pain, 15 anxiety, 21 some cancers, 16,18 renal and liver diseases, 16 visual impairment, 16 and cytostatic, other or no treatment of CLL. [15][16][17][18][19][20][21][22] See Appendix S4 (online Supporting Information) for a detailed description of these studies.…”

Validation of the Chinese EORTC chronic lymphocytic leukaemia module – application of classical test theory and item response theory

“…Compared with the flourishing studies on treatments of CLL disorders, research assessing the health-related quality of life (HRQoL) of CLL patients is scarce. Although some have encouraged the adoption of cancer-specific measures, such as EORTC QLQ-C30 [7], to assess CLL patients' HRQoL in previous studies, others have argued that these may be unsuitable for measuring the effectiveness of interventions or policies focusing on CLL care due to the bias and uncertainties brought up by non-CLL specific measures [8]. Recently, the application of FACT-Lymphoma (FACT-L), an instrument developed to assess the HRQoL of patients living with all types of lymphoma, has increased [9][10][11].…”

Ruxolitinib for symptom control in patients with chronic lymphocytic leukaemia: a single-group, phase 2 trial

“…2–5 Disease-associated symptoms such as fatigue, low-grade fever, night sweats, and weight loss are associated with elevated circulating levels of inflammatory cytokines and/or chemokines. Most symptomatic patients are treated with supportive care measures that provide little clinical benefit.…”