1108 - Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia

Introduction
Infections are a leading cause of mortality and affect the management of their day-to-day activities for individuals with chronic lymphocytic leukaemia (CLL) (Crassini, 2018). COVID-19 has highlighted the immune-related difficulties faced by individuals with CLL, which increases their vulnerability to COVID-19 infection and negatively impacts their daily lives. During the initial wave of COVID-19, individuals with CLL had fatality rates up to 16.5 times higher than the global median rate (Arellano-Llamas, 2022).

Lymphoma Coalition’s 2020 Global Patient Survey completed by 9,179 patients and 2,699 caregivers from over 90 countries said 19% were affected by frequent infections (Lymphoma Coalition, 2020). In contrast, a comprehensive literature review of available data and clinical guidelines on the management and support of individuals with CLL showed that data related to the risk and management of immune challenges remains limited.

To address the gaps in guidelines and data available, a multidisciplinary steering committee comprising of leading clinicians, patient representatives and patient advocacy groups (PAGs) was established to formulate recommendations aimed at enhancing the management of immune challenges experienced by people with CLL.

Methodology
The steering committee was brought together at one virtual working group meeting to discuss evidence around the impact of immune challenges on individuals, best practice management and immune-related support. The working group comprised of leading clinicians, patient representatives, and patient advocacy groups (PAGs) who were able to share expert insights and information along with the views of their respective patient members.

To inform discussion and associated recommendations, a comprehensive literature review of published data across a timeframe of 2017-2022 focussed on chronic lymphocytic leukaemia and immune challenges was undertaken, including published data from PAG-initiated patient surveys and testimonials. It excluded non-English language publications and articles specifically focussing on COVID-19 vaccination (Table 1).

To accompany the findings from the literature review and better qualify the impact of immune challenges, a patient survey was completed by representatives from four countries. The survey focused on the real-life experiences of immunocompromised individuals with CLL including how it affects their day-to-day lives and what challenges they experience in their care.

The meeting discussions, patient survey, and associated testimonials, alongside the themes established after the literature review were considered to formulate recommendations that were agreed and ratified by the steering committee.

Results
Discussion focussed on the evidence base for the impact of immune challenges on people with CLL, particularly gaps in existing care and published data. It covered immune-related best practice management for people with CLL, as well as the role of HCPs in ensuring individuals receive specific immune-related care and support (Table 2).

Based on the combined experience of committee representatives, a consensus was reached that immune challenges in haematological cancers, particularly regarding a patient’s quality of life, can be worse than other cancers. Patient testimony found that doctors focus on the cancer treatment and do not discuss infection risk and prevention.

COVID-19 was identified as a catalyst that has enabled immune-related challenges to be increasingly discussed in the clinical assessment and management of CLL. However, there remains a need to support HCPs to optimally manage immune challenges; and provide individuals with a range of information and resources on immune challenges to feel empowered.

Consensus was reached that establishing the impact of vaccination status on CLL outcomes and understanding the social and mental health impact and prioritizing research are important tools to build a stronger evidence base on immune challenges.

It was agreed that developing global clinical guidelines for monitoring and managing immunosuppression; ensuring that patient health records flag immunocompromised status and promoting shared decision-making and personalized approaches in CLL management would support HCPs to optimally manage individuals.

The steering committee highlighted that disseminating resources focused on immune-related challenges to educate individuals would enable better infection prevention.

Conclusion
The literature review and discussions highlight the significant immune-related challenges individuals with CLL face. The vulnerability to infections, including COVID-19, has emphasized the urgent need for improved management and support. The recommendations address key areas, including establishing a robust evidence base, supporting HCPs to manage immune challenges, and access to information. It is important for stakeholders to embrace these recommendations and collaborate to optimize healthcare delivery so that CLL patients receive the comprehensive immune-related management and care they deserve.