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.