Executive Summary

The Chronic Lymphocytic Leukaemia Advocates Network (CLLAN) conducted an analysis of the 2023 Global Leukemia Experience Survey data to examine diagnostic pathways, immunity status, and treatment decision experiences of people with CLL. The survey was a collaboration between Acute Leukemia Advocates Network (ALAN), CML Advocates Network (CMLAN) and CLLAN. It was released online in 13 languages to international respondents aged 18 or more, distributed via the advocacy networks.

We provide the key findings and implications for people with CLL, and the key findings and recommendations for clinicians and advocacy groups:

Key findings and implications for people with CLL

Lack of knowledge of symptoms and delay in visiting healthcare professionals
The proportion of respondents with CLL who were not aware that the symptoms they were experiencing could be due to leukemia and waited to visit a clinician is highly concerning. It is important that people seek medical attention at the earliest opportunity. Improving symptom awareness in the general population and educate primary care clinicians.

Understanding of and engagement with the active monitoring strategy
Respondents do not fully understand the active monitoring strategy and may lack adequate support in managing symptoms. People need to be educated on how to recognise CLL progression and when to seek further medical advice. Clear information, education and support to aid understanding of active monitoring can empower patients and impact on emotional psychological anxiety burden.

Impact of immunity awareness on quality of life
Respondents who did not receive clear information about what steps to take to stay healthy and avoid infections reported worse quality of life. Respondents who received complete information about CLL immunisation / vaccination protocols reported better quality of life.

Key findings and recommendations for clinicians and advocacy groups

Enhance symptom awareness
Develop and implement targeted educational campaigns, with emphasis on primary care empowerment, to reduce clinical delays in referral escalation and diagnosis, and emphasis early symptom recognition and timely consultations to reduce delays in patients presenting.

Improve diagnostic clarity
Many respondents with CLL did not receive clear information on their diagnosis. Once a diagnosis is made, ensure that explanations given are clear and comprehensive, including understanding the nature of the disease, progression, potential compromised immunity and varied prognoses.

Enhance communication and support for active monitoring plans
Prioritise clear, consistent communication about active monitoring plans, ensuring that people fully understand what it entails and how to manage their symptoms and progression.

Focus on person-centred immunity status education
Given the links between immunity awareness and quality of life, clinicians could focus on delivering clear and practical guidance on managing compromised immunity by providing personalised advice, including vaccination / immunisation protocols for CLL.

Strengthen involvement in treatment decisions
Clinicians should actively involve people in treatment decisions, offering them choices and ensuring they understand the implications of each option. This may be achieved by empowering clinicians in communicating in this way with patients and by empowering patients with clear information and learning opportunities to be more able and confident to become involved in their own healthcare discussions and decisions with their doctors.