Impact of active surveillance, chlorambucil, and other therapy on health-related quality of life in patients with CLL/SLL in the Netherlands

Abstract

As survival of patients with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) increases and the number of patients who live long rises, health-related quality of life (HRQoL) becomes a relevant endpoint. Few studies investigated this, mainly as a secondary endpoint in randomized clinical trials where patients with early stage CLL/SLL, and elderly/frail patients were underrepresented. The aim of our study was to assess HRQoL in a population-based setting, including these previously underrepresented patients. Out of 175 patients diagnosed with CLL/SLL between 2004 and 2011, 136 (78 %) returned the HRQoL questionnaire. The outcomes were compared to an age- and sex-matched norm population. Detailed data on stage and treatment were extracted from a population-based hematological registry (PHAROS). Patients ever treated for CLL/SLL reported significantly poorer HRQoL than the norm population (p < 0.01 with large clinically important differences. Interestingly, no differences were observed between the norm population and patients under active surveillance. In contrast to our hypothesis, patients treated with chlorambucil reported the lowest HRQoL scores. Drastic, long-lasting negative effects of starting treatment on HRQoL cannot be excluded, whereas active surveillance does not seem to provoke worrying, anxiety, or depressive symptoms. Further elaborate research into the impact of starting therapy on HRQoL is needed, especially in patients that are underrepresented in most clinical trials, and thoroughly consider its results during revision of treatment guidelines.

The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia

“…The sample participating was homogenous, with the majority of individuals being Caucasian and educated. The mean age of patients was 64 years, which, although similar to that observed in CLL clinical trials (e.g, Else et al, 2008; van den Broek et al, 2015), is lower than the median age of CLL diagnosis (71 years; Howlader et al, 2015) recorded in national samples.…”

Improvement in Parameters of Hematologic and Immunologic Function and Patient Well-being in the Phase III RESONATE Study of Ibrutinib Versus Ofatumumab in Patients With Previously Treated Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma

“… 3 , 4 Patient-reported outcome (PRO) scores of emotional well-being tend to be lower in patients with CLL than in patients with other malignancies, 4 and studies have shown significant QoL improvements with effective CLL treatment including chemotherapy, as well as in prior small non-randomized studies with ibrutinib. 5 – 11 …”

Patient and provider experiences with active surveillance: A scoping review

“…AS avoids or postpones definitive cancer treatment until there is evidence from periodic observation or testing that a patient is at risk of or has disease progression [ 2 ]. AS is considered a management option for patients with prostate cancer [ 3 , 4 ], and research is accumulating to establish the clinical effectiveness of AS for renal cell carcinoma (RCC) [ 5 , 6 ], ductal carcinoma in situ (DCIS) of the breast [ 7 ], follicular lymphoma [ 8 ] and chronic lymphocytic leukemia (CLL) [ 9 ].…”