We are pleased to share additional insights from the “2023 Global Leukemia Experience Survey: CLL specific findings, unmet needs and recommendations for action“.

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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.

It is well known that each diagnoses within the broader leukaemia classification face a varied diagnostic and treatment pathway, and ultimately for individuals, different challenges to navigate. We provide the key findings and implications for people with CLL, and outline 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. As chronic leukaemia progression is slower than acute, the symptom onset can be subtle and take years to have an impact on quality of life. Improving symptom awareness and early health seeking behaviour in the general population and targeted education for primary care clinicians may address this.

Understanding of and engagement with the active monitoring strategy
It was identified that 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. With the majority of people with CLL having experience with active monitoring, clear information, education and support to aid understanding of active monitoring can empower patients and positively impact on emotional psychological anxiety burden.

Impact of immunity awareness on quality of life
Both the disease and the treatment for CLL impact heavily on the function of a person’s immune system. Regardless of treatment stage, all people with CLL need to understand their vulnerabilities to infections and their management plans if diagnosed with an infection. 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 emphasise early symptom recognition and timely consultations to reduce delays in patients presenting. Further to this, targeted campaigns that support general population to understand the subtle symptoms of CLL and strategies to support health seeking behaviour.

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
With a high prevalence of people placed in an Active Monitoring plan, 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.

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We wish to thank all those individuals that took the time to complete survey. This report is YOURS! Thank you for contributing to this important piece of evidence!