Chronic Lymphocytic Leukaemia (CLL)

The CLL Patient Experience:
Shared Decision-Making

Shared decision-making plays a critical role in chronic lymphocytic leukaemia (CLL) care. With more treatment options available, it is essential that patients are informed, included, and supported in making choices that align with their goals and preferences. This special report presents results from the 2024 Lymphoma Coalition Global Patient Survey (GPS) on Lymphomas & CLL, offering a detailed look at the experience of shared decision-making in CLL care today.

This report highlights that while patients with CLL want to be active participants in their care, there are still barriers to effective shared decision-making. Strengthening conversations, improving access to information, and consistently addressing symptoms and concerns are key to improving the care experience for patients worldwide.

Report Highlights

• The chronic nature of CLL/SLL means that many patients will live with this disease for many years, and all patients require more support to manage the coupled long-term physical and emotional issues that impact well-being. This should be considered in shared decision-making.
• While approximately two-thirds of patients say their CLL doctor is empathetic and listens carefully to them without interrupting, only half of patients say they are able to ask questions and have them answered in an understandable way.  Most patients say they feel informed, but half lack knowledge about the characteristics of their disease that can impact treatment choice, and only 4 in 10 fully understand their treatment plan.
• In the past six months, 76–81% of patients reported experiencing psychosocial issues related to CLL, yet 17–46% did not tell their healthcare team.
• Six out of ten patients said there was no follow-up on the psychosocial concerns they shared with their medical team.
• While most patients want to be involved in decisions about their care, less than a third were given a choice of therapy before their most recent treatment.

The report is available for download in both A4 and letter formats. Simply click the button to the left to access your preferred version.

Chronic lymphocytic leukaemia (CLL) / Small lymphocytic lymphoma (SLL)

CLL is classified by the accumulation and rapid reproduction of clonal B cells in the blood, bone marrow, and lymph nodes. CLL and SLL are essentially the same disease, the only difference being where the cancer primarily occurs. When most of the cancer cells are located in the bloodstream and the bone marrow, the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are located mostly in the lymph nodes, the disease is called SLL.

The progression of CLL is extremely variable ranging from indolent (slow-growing) disease not requiring treatment to one that progresses rapidly and is resistant to treatment. CLL is one of the most common types of leukemia in adults, usually occurring during or after middle age. It rarely occurs in children.

2023 Special Report: The CLL Patient Experience with Relapsed/Refractory Disease

This report offers an in-depth overview of Chronic Lymphocytic Leukaemia (CLL), detailing the diagnostic and pre-treatment pathways, available treatment options, and access disparities in LC Member countries. It also explores the lived experiences of CLL patients, particularly during the COVID-19 pandemic, which presented unique challenges. The report delivers crucial insights and recommendations to optimise care and support for CLL patients globally, addressing both clinical and psychosocial aspects of their journey.

2022 CLL Subtype Report

The focus of this report is to:

• Provide a current understanding of CLL
• Explain the diagnosis and pre-treatment process
• Outline CLL treatment options and protocols, including:
  • Therapy access in Lymphoma Coalition (LC) member countries
  • Clinical trial access in LC member countries
• Highlight Covid-19-related considerations for patients with CLL
• Explore the experience of patients with CLL

2022 CLL Subtype Report: Conclusions & Recommendations

It is likely that the prevalence and mortality of CLL will continue to increase because the global population is ageing. Therefore, it is important for major gaps in understanding, treatment, and care to be addressed.

Lymphoma Coalition firmly believes that if we, patient organisations, and other key stakeholders work together, we can jointly bring about positive change. Change will take time. There are steps we can take now that, once successfully implemented, will act as a solid foundation for future activities. Well-thought out, consistent effort over time will lead to improved patient experience.

The following are identified priorities from the Lymphoma Coalition’s perspective.