A global study of people living with chronic lymphocytic leukaemia (CLL) has identified gaps in patients’ understanding of their condition, with findings showing that knowledge about infection risk and disease monitoring is linked to quality of life.
The study, coordinated by international charity Picker and published in Frontiers in Hematology, analysed responses from 846 people with CLL who took part in the 2023 Global Leukaemia Experience Survey.
The findings highlight several challenges faced by people living with CLL:
- Most respondents (69%) experienced symptoms before diagnosis, yet 89% did not recognise them as signs of leukaemia. Fatigue, swollen lymph nodes and fever / night sweats were the symptoms most often reported.
- Less than half (43%) said their diagnosis was explained in a way they fully understood.
- The majority (84%) had been placed on “active monitoring”, where treatment is delayed until it is needed. While this is medically safe, one in four people (25%) said they felt very concerned about being placed on active monitoring.
The study found that people who did not know their immunity status or had not received complete information about infection prevention and immunisation strategies, had worse quality of life scores.
CLL is often managed without immediate treatment, meaning patients must play an active role in monitoring their condition. However, the findings suggest that many people do not feel adequately informed or supported to do so.
Given the increased risk of infections in people with CLL due to disease-related and treatment-related immunosuppression, understanding immunity status and infection prevention is essential.
The study highlights the importance of ensuring that people with CLL receive clear, accessible information and feel supported to understand and manage their condition - particularly while on active monitoring.
Lead authors Kathryn Huntley and Prof Sam Salek said: “People with CLL often face uncertainty about symptoms, active monitoring, and their immunity status. When information and explanations are clear, people feel more confident and report better quality of life.”
The study was funded by the CLL Advocates Network and can be accessed here: https://www.frontiersin.org/journals/hematology/articles/10.3389/frhem.2026.1794624/full
