As a continuation from the 2021/2022 Global Leukemia Patient Experience Survey and with the aim to include a carer cohort to evidence the impact from their perspective, in 2022 the CLL Advocates Network (CLLAN) in partnership with the Acute Leukemia Advocates Network (ALAN), the CML Advocates Network (CMLAN) and Leukaemia Care UK ran a Global Leukemia Carer Experience Survey to understand the experiences and views of people who care for, or support leukemia patients. It targeted carers of patients with a diagnosis of ALL, AML, CLL or CML and was made available in 11 languages. This was an international patient group-led initiative.

OBJECTIVES

• To identify priority topics, assess areas of change including (but not limited to) COVID.
• Include a carer cohort – to evidence the impact from their perspective
• To aid patient advocates and advocacy groups to inform and influence stakeholder communities, industry, and policy makers – enabling evidence-based advocacy.

RESULTS

There were 577 respondents (all of them leukemia carers) from 79 countries.

NEXT STEPS

We are in the process of analyzing the data and expect to be having the following reports and recommendations ready by spring 2023:

• CLL specific report from analysis of the CLL specific carer experience survey data set
• A comparison analysis of the CLLAN 2021 Resource Mapping and Unmet Needs Survey vs. the 2021/22 CLL patient experience survey and the 2022 carer experience survey

Abstracts and posters for 2023 scientific conferences are in planning.

Thanks to carers worldwide who took the time to complete this survey and – by this – helped us generate patient-based evidence on leukemia.

Acknowledgement

We’d like to thank ALAN for taking the lead in delivery of this project and the sponsors that have supported this important work.