Prioritizing AEs May Lead to Improvement in Communication Between Patients With CLL and Their Oncologists

Data published in Patient Preference and Adherence found communication improved between patients with CLL and their oncologists when the risk of adverse events and patient goals were top of mind.

Focusing the discussion on the risks of adverse events (AEs) with patient goals in mind has the potential to improve communication between oncologists and their patients who are in first-line treatment for chronic lymphocytic leukemia (CLL), according to research published in Patient Preference and Adherence.

The investigators worked to understand further how variations in attributes impact treatment choices between oncologists and patients, as research in this area is very limited.

“These data suggest that patients and oncologists may perceive the risks and benefits associated with novel agents differently,” wrote the investigators. “Patient–oncologist communication could be enhanced through a discussion of the risks of AEs, relative to treatment outcomes, with a focus on available novel therapies.”

The greatest impact on first-line treatment preferences was observed when 2-year progression-free survival (PFS) was increased from 75% to 95%. This accounted for 40% and 30% of variation in the preferences of patients and oncologists, respectively.

More, the differences in risk for atrial fibrillation, infection, and discontinuation due to adverse events (AEs) were also among the important factors affecting preferences for patients and oncologists. On the other hand, the differences in risk for tumor lysis syndrome and bleeding were least impactful in treatment decision-making.

When analyzing things together, the research team determined that oncologists required 2 to 4 times higher increases in 2-year PFS rates to accept any risks due to AEs—including atrial fibrillation, infection, and discontinuation—when compared with the same rates that were considered acceptable to their patients.

“This study elucidates the importance of PFS to oncologists and patients with CLL in the era of novel targeted therapies. It adds to existing literature by quantifying the trade-offs that these groups are willing to make to avoid potential risks of AEs and associated treatment discontinuation,” wrote the investigators. “Important differences between the 2 groups emerged, with oncologists requiring much higher increases in PFS than patients to accept increased risks of AEs and treatment discontinuation.”

The team of researchers had the participants (n = 371), including both patients (n = 220) and oncologists (n = 151), complete an online discrete choice experiment to quantify the specific preferences for first-line treatment with novel agents. The participants chose different hypothetical treatment profiles with 8 attributes of varying levels.

The research was limited by its convenience sampling technique to acquire the study’s population, which potentially limits the generalizability of the sample’s data to the broader CLL population. More, the mean age of the sample population was lower than the mean age of all patients with a CLL diagnosis, indicating a potential issue when generalizing the data across all patients with CLL.

“The current study provides unique insights into treatment preferences in the [first-line] treatment setting among patients with CLL and oncologists in the US,” wrote the investigators. “The highest value was placed on improvements in 2-year PFS by both oncologists and patients, but they also valued safety, especially decreased risks of [atrial fibrillation], infection, and discontinuation due to AEs.”


Le H, Ryan K, Wahlstrom SK, et al. Oncologist and patient preferences for novel agents in first-line treatment for chronic lymphocytic leukemia: commonalities and disconnects. Patient Prefer Adherence. 2021;15:99-110. doi:10.2147/PPA.S289139

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