Researchers assessed how patients with chronic lymphocytic leukemia (CLL) describe quality of life (QoL) compared to other U.S. populations, as well as the effects on daily living, finances, and professional and family relationships. Joanne S. Buzaglo, PhD, at the Research and Training Institute, Cancer Support Community in Philadelphia, PA, discussed the findings at the ASH Annual Meeting.

A total of 134 patients with CLL were enrolled in the Cancer Support Community’s online cancer experience registry. They provided sociodemographic information and clinical history and completed surveys, including PROMIS, which assesses seven health-related QoL domains.

The researchers used multiple linear regression analysis to examine the association between course of CLL—including undergoing observation, currently receiving first treatment, currently receiving second or subsequent treatment, in remission, or receiving maintenance therapy—and PROMIS subscale T scores, adjusting for sociodemographic variables—including age, gender, education, and income.

The mean patient age was 61 years (standard deviation [SD] = 9), 47% were female, and 96% were Caucasian. The mean time since CLL diagnosis was seven years (SD = 5). More than one-third of patients (37%) were undergoing observation before initiating any treatment, 6% were receiving their first treatment, 12% were in active second or subsequent therapy, and 29% were in remission. When describing their overall health, 38% said it was very good or excellent, 45% said good, and 17% reported fair or poor health.

Considerable proportions of patients with CLL reported substantially worse QoL (> 1 SD) than the national average of the U.S. population for

  • Anxiety (21%)
  • Fatigue (21%)
  • Physical functioning (15%)
  • Social functioning (12%)
  • Depression (11%)
  • Sleep disturbance (9%)
  • Pain interference (5%)

Many respondents indicated that CLL “somewhat to very much” affected their views on life expectancy (62%), QoL (41%), finances (40%), ability to work (34%), and relationships with friends and family (26%).

Worse anxiety was significantly associated with active treatment, whether first-line or subsequent therapy (p < 0.05 for both). Patients currently receiving second or subsequent therapy reported significantly worse physical (p < 0.05) and social functioning (p < 0.05), as well as greater levels of fatigue (p < 0.01) and depression (p < 0.05). A significant relationship was also seen between sleep disturbance and currently receiving second or subsequent treatment (p < 0.01). No significant associations were found between observation status or disease remission and QoL outcomes.

Further examination of factors that influence poorer outcomes and the evaluation of interventions designed to address emotional distress and QoL concerns, especially among people with progressing disease, is needed.