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    Topics Alert Archive

    Alert Number 253

    Quality of Life with CLL

    Date: September 29, 2024

    Remember that Quality of Life survey that we bugged you to fill out a while ago? Well, finally we have some results from that study. A whopping 1,482 patients took that survey and the vast majority – more than 95% of them – were CLL Topics members. The survey is a first of its kind by a major research institution (Mayo Clinic, Rochester MN), and it was possible only because of our ability to mobilize patients. Take a bow, you guys. You did us proud.

    This article is the first of several articles that will be published in the months to come, as well as presentations at various conferences, etc. It seems journals don’t like publishing long articles, hence the need to slice the results into several smaller articles. I guess it also does not hurt to have a long list of publications for the authors. Ahem. I am one of the authors. But since I am a retired oil patch chemical engineer, I don’t particularly care how many oncology articles are on my list of publications. After a few more of these articles have been published, I will do a full length review of the findings on this website.

    Some of the findings of this study will seem obvious to you. And well they should, since your responses were what drove the findings! Write to us if you want to read the full article and see what the patient community had to say about living with CLL.

    Be well,



    Br J Haematol. 2024 Oct;139(2):255-64.

    Quality of life in chronic lymphocytic leukemia: an international survey of 1482 patients.

    Shanafelt TD, Bowen D, Venkat C, Slager SL, Zent CS, Kay NE, Reinalda M, Sloan JA, Call TG.

    Mayo Clinic College of Medicine, Rochester, MN; CLL Topics, Inc., Sedona, AZ.

    Although a diagnosis of chronic lymphocytic leukemia (CLL) can have a profound effect on the quality of life (QOL), few studies have objectively measured the QOL of CLL patients or compared it to the general population. We conducted an international, web-based survey of patients with CLL using standardized instruments with published population norms to evaluate fatigue and QOL. Co-morbid health conditions were assessed using the Charlson Co-Morbidity Index. Between June and October 2024, 1482 patients with CLL responded to the survey. The physical, social/family, functional, and overall QOL scores of CLL patients were similar to or better than published population norms. In contrast, the emotional well-being scores of CLL patients were dramatically lower than that of both the general population (P < 0.001) and patients with other types of cancer (P < 0.001). QOL scores were lower among individuals with advanced stage disease (all P < 0.05). Factors associated with lower overall QOL on multivariate analysis included older age, greater fatigue, severity of co-morbid health conditions, and current treatment. CLL has a profound impact on QOL at all disease stages. The effects of CLL on QOL appear to differ from that of other malignancies with a more marked impact on emotional QOL. Research identifying efficacious psycho-oncologic support interventions for patients with CLL is needed.

    PMID: 17897301 [PubMed - in process]


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