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 571 respondents (all of them leukemia carers) from 48 countries. The spread of caring responsibilities by leukemia type was as follows: CLL 26% (n=150), CML 33% (n=183), AML 19% (n=110), ALL 18% (n=100), Other 5% (n=28).

SURVEY REPORTS & RECOMMENDATIONS

The results of the 2021/22 CLL patient experience survey and the 2022 carer experience survey were combined on one single report: The Global Patient and Carer Experience Survey Report 2021-2022. Click below to access the Executive Summary and the Full Survey Report.

Survey Comparison: In August 2023, CLLAN launched a comparison analysis of the CLLAN 2021 Resource Mapping and Unmet Needs Survey vs. this 2021/22 CLL patient experience survey and the 2022 carer experience survey. Click here to access the Executive Summary, the Full Report and the Presentation of Key Findings of our Survey Comparison Report.

SCIENTIFIC ABSTRACTS

An abstract entitled “Experiences and views of Leukemia Carers: A global survey” was submitted to EHA 2023 and – although not accepted for poster presentation – it was published in the Abstract Book of the European Hematology Association´s 28th Annual Congress – EHA2023 Hybrid Congress and as a supplement of EHA´s open access journal HemaSphere:

Samantha Nier et al: EXPERIENCES AND VIEWS OF LEUKEMIA CARERS: A GLOBAL SURVEY, Hemasphere. 2023 Aug; 7(Suppl ): e038702e. Published online 2023 Aug 8. doi: 10.1097/01.HS9.0000977368.03870.2e, https://journals.lww.com/hemasphere/fulltext/2023/08003/pb2673__experiences_and_views_of_leukemia_carers_.2516.aspx

Thanks to all carers worldwide who took the time to complete this survey and – by this – helped us generate carer-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.