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Alert Number 260

Tell It Like It Is, Please

Date: November 17, 2007

Remember that Quality of Life (QOL) survey that we urged you to take several months ago? This was a first-of-its-kind survey, conducted by collaboration between CLL Topics and Mayo Clinic. For a change, we got to speak our minds, rather than listening meekly while the experts (and not-so-experts) talked down to us. As we reported earlier, some of the findings were published in a recent article in the British Journal of Hematology. QOL survey: BJH article

Here is the next installment of results, a poster presentation to be made at this year’s American Society of Hematology (ASH 2007) conference. Once again, my name on the authors list is no more than a stand-in for all of our members who participated in this study. You are the real authors of this and other related articles in the future. Take a bow, ladies and gents!

The conclusion in this presentation should not surprise any patient, but it is amazing how few oncologists seem to be aware of it. Patients do not like to be jollied along by condescending doctors. Most patients who have CLL are not born yesterday, and few of us fall for the line “CLL is the good cancer to have”. And yet, this is the typical brush-off most of us experience as we try to deal with the life altering moment when we are diagnosed with cancer. It is hard enough to face all the emotional ups and downs of this incurable disease. This cavalier attitude from many of our doctors makes us feel all the more insecure.

Let us hope at least some of the oncologists attending ASH 2007 will take away this important message from their patients: Please treat us with seriousness, give us the straight scoop, and be willing to engage us in a two-way communication. Help us learn to deal with this diagnosis – we have too much at stake to fall for superficial brush-off lines.

Be well,



[2060] The Physician-Patient Relationship Impacts Patient Quality of Life in Chronic Lymphocytic Leukemia: Results of an International Survey of 1482 Patients. Session Type: Poster Session, Board #250-II

Tait D. Shanafelt, Deborah Bowen, Chaya Venkat, Susan L. Slager, Clive S. Zent, Neil E. Kay, Megan Reinalda, Jeff A. Sloan, Timothy G. Call

Mayo Clinic, Rochester, MN, USA; CLL Topics, Inc., Sedona, AZ

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 patients' 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.

Abstract #2060 appears in Blood, Volume 110, issue 11, November 16, 2007

Keywords: B-Cell Chronic Lymphocytic Leukemia|Quality of Life|Supportive Care

Sunday, December 9, 2007 6:00 PM

Session Info: Poster Session: CLL: Frontline Therapies and Vaccine Strategies (6:00 p.m.-8:00 p.m.)


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