Empowering patients with CLL during active monitoring: a call-to-action

Hear from a patient living with Chronic Lymphocytic Leukaemia and learn about their experiences with ‘active monitoring’.

 

Read the Call-To-Action HERE

Globally, incidence of Chronic Lymphocytic Leukaemia (CLL) is on the rise [1]. With survival rates significantly improving over the past two decades, more patients will face prolonged periods of ‘watch and wait’ or ‘active monitoring’ [2]. All too many patients report not fully understanding the rationale behind active monitoring and often turn to unreliable external sources of information.  Lack of credible information and an absence of universal structured support from medical professionals adds additional fear and anxiety.

To address the challenges faced by patients with CLL who undergo active monitoring, a call-to-action was initiated by BeOne and supported by Patvocates, CLL Advocates Network (CLLAN) and the CLL community. This call to action emerged from two workshops where patients, care partners, patient advocates and health care practitioners (HCPs) convened to discuss areas of unmet needs.

Three critical areas were identified:  

  1. Enhancing Healthcare Provider (HCP)-Patient Communication
  • Insights from the patient community found that many multidisciplinary teams (MDTs) lacked internal co-ordination, and communication about active monitoring was fragmented and inconsistent. Based on these findings it is crucial to develop HCP training, prioritise active listening and consistent messaging within MDTs.
  1. Improving Access to Trustworthy Information
  • Patients in the active monitoring stage describe it as a time of ‘wait and worry’, highlighting the importance of access to credible information and the psychological burden a lack of access can cause[3]. Access to the latest, evidence-based information could improve patient anxiety.
  1. Strengthening Peer Support and Patient Organisation Engagement
  • There is a frustration among patients at the lack of support provided during active monitoring in the form of peer support programmes, digital or paper monitoring tools. It is essential for HCPs to take an active role in patient referral and for continuous collaboration between patient organisations and MDTs to occur.

 

The Call-to-Action: We call on all those who can make a difference – including healthcare providers, patient organisations, policymakers, medical societies and industry – to join forces and drive for change to improve the lives of patients with CLL – CTA Report Link (Download PDF/Read online) #NavigatingCLLTogether

References:

  1. Ou, Y., Long, Y., Ji, L., Zhan, Y., Qiao, T., Wang, X., Chen, H. and Cheng, Y., 2022. Trends in disease burden of chronic lymphocytic leukemia at the global, regional, and national levels from 1990 to 2019, and projections until 2030: a population-based epidemiologic study. Frontiers in Oncology, 12, p.840616.
  2. CLL Advocates, 2025. Insights from the 2023 Global Leukemia Experience Survey: CLL-specific findings, unmet needs, and recommendations for action. Available at: https://www.clladvocates.net/wp-content/uploads/2025/01/Insights-from-the-2023-Global-LeukemiaExperience-Survey-CLL-specific-findings-unmet-needs-and-recommendations-for-action.pdf [Accessed 23 April 2025].
  3. Dunnion, C., Giltenane, M. and Dowling, M., 2023. The ‘inbetweeners’: living on a watch and wait approach for chronic lymphocytic leukaemia – a qualitative study. British Journal of Nursing, 32(16), pp.794-800.