Living with chronic lymphocytic leukaemia: patient perspectives from a global online cross-sectional survey on care pathways and impacts on quality of life

Background Chronic Lymphocytic Leukaemia (CLL) is a slow-progressing condition often managed through active monitoring (“watch and wait”) strategies, which can lead to uncertainty for patients about prognosis, symptom management, and immunity-related risks. We studied the diagnostic and active monitoring pathway experiences of patients with CLL, and the impact of immunity-related knowledge on their quality of life (QoL). Methods We analysed data from 846 patients with CLL who responded to the cross-sectional 2023 Global Leukaemia Experience Survey, which included the Haematological Malignancy Specific Patient-reported Outcome (HM-PRO) instrument. Higher HM-PRO scores represent worse QoL. We used descriptive statistics and Kruskal-Wallis tests to quantify the impact on QoL. Results Most respondents (69%, 582/841) reported experiencing symptoms before diagnosis, although the majority (89%, 509/571) did not recognise these as signs of leukaemia. A large proportion (84%, 701/831) were placed on active monitoring, amongst whom 25% (172/689) reported being “ very concerned/worried ” about this approach. Fewer than half felt fully confident recognising signs of progression. QoL did not differ significantly by current active monitoring status but was associated with immunity-related knowledge: respondents unaware of their immunity status had worse QoL (median HM-PRO Part A “ No ”: 13 vs “ Yes ”: 11). Respondents who had not spoken to a healthcare professional about immunisation strategies reported higher HM-PRO Part-A scores (“ No ”: 13 vs “ Yes, completely ”: 10). Conclusion Our study highlights key challenges faced by individuals with CLL, including lack of symptom awareness, lack of association of those symptoms with cancer, inadequate understanding of active monitoring, and the impact of immunity-related education on QoL. Addressing these challenges through coordinated efforts amongst clinicians, advocacy groups, and policymakers may contribute to improved disease management and QoL for individuals living with CLL. Future research could seek to account for potential confounders to enhance the robustness of conclusions and build on these global findings by examining country-level differences.