Authored by Brian Koffman (MDCM, retired), MSEd
Bottom Line:
People with CLL deserve accurate diagnosis, holistic care, and a voice in decisions. This charter reflects input from patients, advocates, and experts.
Who Performed the Research and Where Was it Presented:
CLL Society’s own Dr. Brian Koffman led an international group of leading CLL researchers, clinicians, patients, and advocates in the publication of “A Charter for Improving Care for People Living with Chronic Lymphocytic Leukemia: Six Principles for Excellence” in the peer-reviewed medical journal, Leukemia and Lymphoma.
This Charter has been organized and funded by AstraZeneca.
Background:
Chronic lymphocytic leukemia, or CLL, is the most common adult blood cancer in the Western world. Although there are guidelines available for management and treatment, they generally pay scant attention to the holistic needs of those living with CLL for what is usually a long journey.
This charter outlines the care standards to which all individuals living with CLL are entitled. Its principles reflect a global ambition to improve care and quality of life. It acknowledges disparities between HICs (high-income countries) and LMICs (low and middle-income countries), recognizing how these differences may shape local care models and the feasibility of implementing policy recommendations.
Methods:
A series of global roundtables brought together healthcare professionals, patient advocates, and people with CLL to identify unmet needs and develop care principles. These were refined through literature review and further input from participants to create this charter.
Results:
The percentages cited below come from the 2024 Global Patient Survey on Lymphomas & CLL.
- Accurate Diagnosis
Accurate diagnosis is foundational for effective CLL care. Yet, 33% of patients reported receiving an incorrect initial diagnosis, and 34% were not informed of their CLL subtype at diagnosis, which is fundamental in choosing the correct therapy. A complete workup, including CBC and flow cytometry, is essential, with further molecular and genomic testing recommended in high-income countries. However, many patients do not receive these tests as recommended. In LMICs, limited infrastructure and financial constraints often lead to delays or missed diagnoses. Up to 75% of low-income countries lack readily available pathology services. These gaps contribute to poor outcomes. International investment and collaboration are urgently needed to improve diagnostic capacity.
- High Quality Information
Patients must receive tailored, accurate, and accessible information to make informed decisions. Yet, 49% of patients reported that diagnostic results were never explained in a way they could understand, and 41% lacked sufficient information about their disease and treatment options. Information must be personalized, culturally appropriate, and delivered in multiple formats. Most patients prefer direct conversations with trusted healthcare professionals, but many lack such opportunities. Addressing this gap requires dedicated time and training in patient-centered communication.
- Shared Decision Making
Shared decision making (SDM) helps ensure that care aligns with patients’ preferences; however, 48% of patients felt they were not as involved as they wished in the decision-making process. Additionally, 61% reported that they lacked sufficient time to consider treatment options, and 70% were not offered more than one choice. Implementing SDM requires time, improved health literacy, and support tools, particularly in LMICs, where structural and cultural barriers may exist. Solutions might include the use of simple decision aids and provider training to support collaborative conversations.
- Access to Care and Specialists
CLL requires lifelong, coordinated care. However, 20% of patients reported not being treated by a cancer care team or coordinator. As treatment options expand, access remains uneven. For example, 41% of patients faced barriers to receiving their most recent therapy. Clinical trials are a key opportunity, but only 48% were informed about them by their healthcare provider, despite 77% recognizing that trials could offer better treatments. Healthcare systems must ensure that patients have access to specialists, new therapies, and opportunities for trial participation.
- Emotional and Psychological Support
The chronic and uncertain nature of CLL places a lasting emotional burden on patients. Yet, 62% reported that mental health needs were either not addressed or neglected in their country. Additionally, 25% said their doctor didn’t ask about their quality of life, 55% received no follow-up about their concerns, and only 38% felt their doctor understood how CLL affected their lives. Mental health screening and support services must be integrated early and throughout the care journey.
- Holistic Model of Care
CLL increases the risk of complications such as infections, fatigue, autoimmune issues, and cardiovascular disease. Among patients reporting fatigue, 46% said their doctor had not offered support or information within the past two years. Between one-third and one-half of all CLL-related deaths are infection-related. Care must extend beyond the disease itself to address these broader impacts. A shift toward holistic, multidisciplinary models of chronic care and survivorship is essential.
Discussion:
This article presents six core principles developed by the global CLL advocacy community. These outline what every person with CLL should expect from their care, regardless of their geographical location. While disparities exist, listening to the voices of people living with CLL and addressing their needs through equitable, patient-centered care remains a universal priority.
Resources and links:
Access a full copy of A Charter for Improving Care for People Living with Chronic Lymphocytic Leukemia.
The article is freely available at: A Charter for Improving Care for People Living with Chronic Lymphocytic Leukemia: Six Principles for Excellence. This journal article has been organized and funded by AstraZeneca.
This Patient Charter has been organized and funded by AstraZeneca.
Z4-76876 | Date of Preparation: September 2025
