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iwCLL 2025 | Improving care for people living with CLL: the six principles for excellence
In this interview, Brian Koffman, MDCM (retired), CLL Society, Inc., Chula Vista, CA, outlines the six principles for excellence that healthcare professionals and patient advocacy organizations should be aware of when caring for patients with chronic lymphocytic leukemia (CLL). Dr Koffman emphasizes the importance of accurate diagnosis, patient-friendly information, shared medical decision-making, accessible and affordable care, emotional and psychological support, and a holistic care model that addresses the patient’s overall well-being. This charter aims to promote improved care for CLL patients worldwide, including in lower- and middle-income countries where access to resources may be limited. This interview took place at the biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL) 2025 in Krakow, Poland.
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Transcript
I was involved in an international effort to look at what were the basic rights patients had, and this went beyond just looking at high-income, first-world countries, but looking at lower- and middle-income countries too. And with the help of patient advocates from around the world and from every continent, we came up with six principles that we were able to publish and are trying to disseminate for patients and patient advocates and healthcare professionals to use when they approach their CLL patients...
I was involved in an international effort to look at what were the basic rights patients had, and this went beyond just looking at high-income, first-world countries, but looking at lower- and middle-income countries too. And with the help of patient advocates from around the world and from every continent, we came up with six principles that we were able to publish and are trying to disseminate for patients and patient advocates and healthcare professionals to use when they approach their CLL patients.
The first one seems pretty basic for people in a first-world country: that patients receive an accurate and definitive diagnosis, but that’s not taken for granted in many countries where access to appropriate flow cytometry and other testing is just not available.
The second is that patients deserve to have high-quality information to be informed of what’s been going on with them, and it should be informed in patient-friendly language.
The third, and again this is going to vary from country to country and resource to resource, but all decisions, treatment-related especially, should be shared medical decision-making.
The fourth is patients should have access to affordable, effective care and should have a range of specialists available to them to take care of the CLL. Most patients are going to live very long lives with their CLL, and most patients are going to go through multiple therapies because all therapies are essentially palliative. So understanding that and working with the patient and having access to the appropriate specialist is going to be critical.
The fifth principle is emotional and psychological support. Because it’s an incurable and long-duration disease, it’s important that there be a bond between the healthcare provider and the patient in front of them that they can work together and understand the anxieties patients go through with the diagnosis, with the beginning of therapies, with the ending of therapies.
And the final is that holistic piece, that a patient deserves a care model that recognizes the total impact of CLL on all their systems, all their physical, emotional, psychosocial systems. And that is something we strive to do and should be strived for, whatever the circumstances are, in whatever environment you’re treating the patients.
This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.
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Disclosures
Consultancy: Abbvie, BeOnc, BMEA, BMS, JNJ, Lilly; Honoraria: AstraZeneca, BMS, GenMab, Invyvid; Equity ownership: Abbvie, AstraZeneca, BeOne, BMEA, BMS, Invyvid, JNJ, Merck, Nurix, Pfizer, VINC.
