Between May and August 2021, the CLL Advocates Network (CLLAN) launched its global survey to explore CLL support provision & needs worldwide, available resources and unmet needs. The objective of this survey was to systematically capture what is happening “on the ground”, learn what organisation offers for Chronic Lymphocytic Leukaemia (CLL) patients and get a better understanding of the impact of COVID-19 on service delivery in different countries.

The survey provided evidence of priorities for support groups and advocates and helped shape the content for CLL Horizons 2021. Survey responses provided conference content priorities and aided with shaping particular sessions. Partly, the results of the survey will be used to build CLLAN´s new Resource Hub, a global directory of CLL support provision and resources that we plan to launch in late autumn 2021.

Patient organisations with CLL / SLL in their remit were allowed to participate in this survey that was available in 7 languages. 57 organisations responded to the survey.

SURVEY FINDINGS

The findings of the survey were presented at our CLL Horizons conference. From the survey findings strategies, practical recommendations and calls to action have been derived that were also presented at the conference.

Here you will find the two presentations related to the survey at CLL Horizons:

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

• CLLAN´s 2021 Resource Mapping and Unmet Needs Survey – Report & Recommendations
• 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 & POSTERS

In 2022, CLLAN submitted an abstract entitled “From Survey to Resource Hub: Chronic Lymphocytic Leukemia (CLL) Global Support Provision” for the 64th annual meeting and exposition of American Society of Hematology (ASH), a premier event in hematology held in New Orleans from 10-13 December 2022. The abstract was selected by the ASH Program Committee for a poster presentation during the congress.

Link to the ASH 2022 abstract of this survey: https://ash.confex.com/ash/2022/webprogram/Paper166711.html

ASH 2022 poster:

Click here to access the poster in .pdf

Virtual poster presentation:

Thanks to all those groups who took the time to complete this survey and for helping identify advocacy needs of worldwide organisations providing support to CLL patients and sharing good practice.

Acknowledgement

We would like to thank the following for their support: