Chronic Lymphocytic Leukemia Patient Reported Outcomes and Quality of Life: Findings from the Cancer Experience Registry

Background: Approximately 20,000 new cases of chronic lymphocytic leukemia (CLL) are expected in the US in 2017 (ACS 2017), yet understanding of the psychosocial consequences of CLL is inadequate. Many people with CLL undergo an active surveillance ("watch and wait") treatment plan, which can pose unique challenges. The purpose of this exploratory study was to compare how CLL patients describe their quality of life compared to other US population groups and describe the extent to which CLL affects daily life, finances, and professional and family relationships.

Methods: 134 individuals with CLL enrolled in the Cancer Support Community's online Cancer Experience Registry, provided sociodemographic information and clinical history, and completed surveys including the Patient-Reported Outcomes Measurement Information System (PROMIS-29v2.0), which assesses seven health-related quality of life domains. We used multiple linear regression analysis to examine the association between course of CLL (undergoing observation, currently receiving first treatment, currently receiving second or subsequent treatment, in remission or maintenance therapy) and PROMIS subscale T-scores adjusting for sociodemographic variables (age, gender, education, income).

Results: The sample was 47% female, 96% White; mean age was 61 (SD=9) years; mean time since CLL diagnosis was 7 (SD=5) years. More than one-third (37%) were undergoing observation ("watch and wait") before initiating any treatment, 6% were receiving their first treatment, 12% were in active second or subsequent therapy, and 29% in remission. 38% of CLL respondents described their overall health as very good or excellent, and 45% as good; 17% indicated fair or poor health. When considering individual responses, considerable proportions of CLL patients reported substantially worse quality of life (>1 SD) than U.S. population national averages for anxiety (21% of respondents), fatigue (21%), physical functioning (15%), social functioning (12%), depression (11%), sleep disturbance (9%) and pain interference (5%). Additionally, many respondents indicated that CLL "somewhat to very much" affected their views on life expectancy (62%), quality of life (41%), finances (40%), ability to work (34%), and relationships with friends and family (26%). All regression models predicting PROMIS subscales were significant (R² = .13 to .20, ps < .05). With respect to CLL course, worse anxiety was significantly associated with active treatment, whether first line of therapy (B=8.0, p <.05) or subsequent therapy (B=6.2, p <.05). Currently receiving second or subsequent therapy was significantly associated with worse physical (B=−5.2, p <.05) and social functioning (B=−6.4, p <.05), and greater levels of fatigue (B=7.6, p <.01) and depression (B=5.1, p <.05). There was also a significant relationship between sleep disturbance and currently receiving second or subsequent treatment (B=5.7, p <.01). No significant associations were found between observation ("wait and wait") status or disease remission and quality of life outcomes.

Conclusion: Over one-fifth (21%) of CLL survivors are experiencing substantial levels of anxiety and fatigue, compared to the general U.S. population. Poorer health-related quality of life was associated with active treatment but not active surveillance ("watch and wait") or when disease was in remission. It remains unclear the extent to which advancing disease versus treatment contributes to worse quality of life. Next steps include further examination of factors that put CLL patients at greater risk for poorer outcomes and the evaluation of interventions designed to address emotional distress and quality of life concerns, especially among people with progressing disease.