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Patient Perspectives on CLL Treatment Side Effects: A Sub-Analysis of the VOICE Survey

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Authored by Dr. Brian Koffman

The Bottom Line:

Side effects are common and impactful with chronic lymphocytic leukemia (CLL) treatments, but patients need more help understanding them. Too many do not know what to do if they experience an adverse event, suggesting an opportunity for improved education that could, in turn, lead to improved outcomes.

Who Performed the Research and Where Was it Presented:

Dr. Constantine Tam from Monash University in Melbourne, Australia, led an international group that presented the real-world survey results at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago in 2023.


All CLL treatments, from chemoimmunotherapy to the newest targeted drug, have associated adverse events or, as patients more commonly call them, side effects (SEs). This survey hoped to get real-world patient-reported experiences of side effects.

Methods and Participants:

Healthcare providers and patient advocacy group representatives developed and distributed a survey from March through December 2022 in 12 countries to CLL patients who had had at least one line of treatment. The anonymous survey was available via an electronic platform, digital questionnaires, or paper forms. The sub-analysis presented at ASCO included items regarding SEs during treatment intervals.


  • Treatment SEs had a moderate or high impact on 27%–43% of patients in every domain:
    • Physical (43%)
    • Psychological (36%)
    • Social (27%)
    • Emotional (30%)
    • Work (31%)
  • Most patients (300 of 370 or 81%) discussed SEs with their physicians “always” or “sometimes.”
  • However, 117 of 277, or 42%, wanted more information about the benefits and SEs associated with their treatment, primarily via the Internet.
  • Most patients would consult their physician first when asked how they would respond to common SEs.
  • It was concerning to discover that >10% of them would continue treatment if they experienced an irregular heartbeat (arrhythmias) or cardiac problems.
  • 21% would continue if they developed hypertension.
  • A similar proportion (11%) would continue treatment if they had an infection.
  • 23% would consider stopping treatment without medical advice if they developed skin cancer.


SEs from CLL treatment impact substantially many patients in multiple life areas. The responses suggest that there is a need for better communication about side effects and to guide them to reliable information about their treatments online, such as CLL Society.

This isn’t just for patient comfort or convenience. Their willingness to stop or continue treatment in response to various side effects, including cardiovascular or cancer-related events, indicates a potentially dangerous knowledge gap regarding the risk associated with these events and could negatively impact their care. The real-world data presented here suggest areas where improved patient education efforts, such as those provided by the CLL Society (see, for example, Managing Side Effects of Oral Targeted Therapies in CLL), could improve patient outcomes. We have more work to do.

Links and Resources:

Watch my monologue on the ASCO abstract:

ASCO 2023: Patient Perspectives on CLL Treatment Side Effects

To read the original ASCO 2023 abstract that contains more details, click on Patient Perspectives on CLL Treatment Side Effects: A Sub-Analysis of the VOICE Survey.

Stay strong. We are all in this together.


Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.