Abstract

Background: Chronic lymphocytic leukemia (CLL) can have a profound effect on the quality of life (QOL) of patients living with the illness. To our knowledge, no studies to date have evaluated the influence of the doctor-patient relationship on patient’s emotional distress or QOL.

Methods: We conducted an international, web-based survey of patients with CLL using standardized instruments to evaluate QOL. Additional questions on the survey explored how often patients thought about their disease and evaluated their satisfaction with specific aspects of their relationship with the physician caring for them. Patients were also asked to indicate what phrases their physicians had used to describe/characterize CLL.

Results: Between June and October 2006, 1482 patients responded to the survey. The diagnosis of CLL was validated in a randomly selected subset of patients. Over half (55.9%; n=822) of patients reported they thought about their CLL diagnosis daily. Although the proportion of patients who thought about CLL daily decreased with time, two or more years after diagnosis over 50% of patients still thought about their disease every day. When asked to indicate their satisfaction with various aspects of the physician caring for their CLL, more than 90% (n=1340) of patients felt their doctor had a good understanding of how their disease was progressing (i.e., the stage, blood counts, lymph nodes) but only 69% (n=1024) felt their physician had a good understanding of how CLL affected their QOL (anxiety, worry, fatigue, etc.). Similarly, while 90% (n=1324) of patients felt comfortable talking to their doctor about treatment and management of CLL, only 77% (n=1134) felt comfortable talking to their doctor about how CLL affected QOL. Reported satisfaction with their physician in these areas strongly related to patients’ measured emotional and overall QOL on standardized instruments (all p<0.001). This effect on QOL remained (p<0.002) after adjustment for age, extent of co-morbid health conditions, measured fatigue, and treatment status in a regression analysis. Finally, patients were asked to indicate whether the physician caring for them had used specific phrases to describe CLL. Thirty-three percent of patients had been told “CLL is the ‘good’ leukemia,” 24% had been told “don’t worry about your CLL,” and 35% had been told “if you could pick what cancer to have, this is what you would choose.” Overall, 52% of patients had received one or more of these characterizations of CLL by their physician. The emotional and overall QOL were worse among patients who reported their physician had used these phrases to describe CLL (all p≤0.001). This effect on QOL remained after regression analysis (p<0.002). Patients whose physician had used one of these phrases to describe CLL were also less likely to feel their physician understood how CLL was effecting their QOL and to feel comfortable discussing the effects of CLL on their QOL with their physician (all p<0.001).

Conclusions: Physicians play an important role helping patients adjust to the physical, intellectual, and emotional challenges of CLL. The effectiveness with which physicians accomplish these tasks appears to impact the QOL of patients with CLL. Additional studies exploring how physicians can best support patients with CLL are needed.

Author notes

Disclosure:Research Funding: Bayer (TD Shanafelt).