CLL Monthly MinutesLeukemia

Moving Toward a Better Understanding of the Chronic Lymphocytic Leukemia Patient Experience

A new model of the symptoms and impacts faced by patients may lead to better clinical tools for understanding the patient experience.
Web Exclusives – March 23, 2021

For many patients who are diagnosed with chronic lymphocytic leukemia (CLL), the cancer is first diagnosed when they have a routine blood test.1 Indeed, many patients don’t have any symptoms for years after their initial diagnosis, as the disease generally progresses slowly.1 Because of its relatively slow development and chronic nature, CLL treatment is often long-term and requires doctors to carefully balance the effective management of their patients’ disease while minimizing side effects and maximizing their quality of life.1

To systematically capture patient symptoms and the impacts of their disease, doctors often use scientifically validated patient interview forms.1 These tools record specific patient-reported outcomes (PROs) and are frequently used in cancer clinical trials.1 However, PROs have typically not been captured in pivotal CLL clinical trials, meaning that doctors treating CLL may not be fully aware of their patients’ most pressing concerns.1

Because it would be impractical to evaluate every single symptom or impact that patients present with in a clinical study, the development of any PRO tool first requires the validation of a conceptual model, which identifies the symptoms and concerns that are most common among patients and therefore potentially most important for researchers to study.1 In a recent paper, researchers reported on a conceptual model for CLL that was built through literature searches, review of patient blogs/forums, and interviews with 5 expert clinicians and 40 patients with CLL (20 of whom had received no more than 1 previous line of therapy, and 20 who had relapsed or refractory disease).1

Overall, 40 different CLL-related symptom and impact concepts, or groups, were identified.1 The 3 most common symptom concepts mentioned in patient interviews were fatigue, swollen lymph nodes, and night sweats.1 Fatigue was mentioned by all patients who were interviewed, and most mentioned it without being prompted by the interviewer.1 Symptom concepts were generally similar between patients on their first line of therapy and patients with relapsed or refractory CLL, although patients with relapsed or refractory disease were more likely to mention treatment-related concepts like nausea and vomiting or infusion-related reactions.1

The 3 most common impacts of CLL that patients reported in interviews were anxiety/worry, decreased physical functioning, and uncertainty.1 As with symptom concepts, patterns of impact concepts were generally similar between patients on their first line of therapy and patients with relapsed or refractory disease.1 However, patients with relapsed or refractory CLL were more likely to mention decreased cognitive/emotional functioning and fear of death.1

Given the slight differences between the responses in each patient population, the study authors devised 3 different versions of the conceptual model: an overall model that included all of the identified concepts, and 2 models that highlighted the most important concepts for patients receiving their first line of therapy and for patients with relapsed or refractory disease.1 Together, these models lay the foundation for the development of new PRO tools that can be used in future clinical trials and allow doctors to better understand their patients’ symptoms and concerns as they live with CLL.1


  1. Eek D, Blowfield M, Krogh C, et al. Development of a conceptual model of chronic lymphocytic leukemia to better understand the patient experience. Patient. 2021;14:75-87.

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Last modified: March 23, 2021

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