INTRODUCTION

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 organisations offer 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 was targeted exclusively at patient organisations with CLL / SLL in their remit (not at patients directly!) and was available in 7 languages. 57 organisations from 40 countries worldwide responded to the survey.

Overall, this survey has demonstrated the high level of interest and engagement in networked activities for both current members of CLLAN (MOs) and non-member organisations (NMOs). It has also highlighted the breadth of services that organisations are offering to patients and the promotion and education around CLL more widely. Through this survey, we have identified gaps in service provision and how this differs across organisations and between different countries across the globe. There is clearly, from the responses provided to this survey, a deficit in services particularly for patients in low-and-middle-income countries (LMIC).

Funding and staffing have been highlighted by organisations as being key barriers to the development of their services.

COVID-19 curtailed the ability of organisations to advocate for patients and their carers. The COVID-19 pandemic is an ongoing concern for those with CLL and their carers, and the potential for new pandemics or other similar disruptions is an important consideration.

As with many aspects of healthcare, a collaborative approach that encompasses the perspective of patients and carers alongside the work of researchers, support organisations, healthcare providers, pharmaceutical companies and wider policy makers will be the most progressive route to make lasting changes.

SURVEY REPORT & RECOMMENDATIONS

These reports and the valuable recommendations therein were made possible because of the support of 57 organisations from 40 countries, members and non-members of CLLAN. CLLAN thanks you for your contribution to this evidence and hopes these summaries assist you in determining your own priorities.

We are currently in the final stages of compiling a comparison analysis of the present survey (CLLAN 2021 Resource Mapping and Unmet Needs Survey) vs. the 2021/22 CLL patient experience survey and the 2022 carer experience survey. Launch of this interesting comparison survey is expected for early August 2023.

USAGE OF SURVEY FINDINGS

1. CLLAN Resource Hub

The results of the survey were used to build CLLAN´s Resource Hub, a global directory of CLL support provision and resources launched in June 2022 and updated on a continuous basis since.

2. Conferences

The survey further provided evidence of priorities for support groups and advocates and helped shape the content for CLL Horizons 2021. At the time of the conference, survey analysis had not been completed. However, key findings identified from the survey returns provided conference content priorities and aided with shaping particular sessions. The findings of the survey were presented at the conference including practical recommendations and calls to action that had been derived from these.

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

3. Abstracts & Posters

3.1. ASH 2022:

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:

3.2. EHA 2023:

In February 2023, CLLAN has submitted an abstract to the European Hematology Association (EHA) on inequities in support identified from the survey. The abstract “Identifying inequities in support – Global Survey of Patient Organisations delivering support services for CLL Patients“ was published in the online abstract book, EHA library and the congress platform of the EHA 2023 Hybrid Congress held in Frankfurt from 8-11 June 2023:

D. Baker et al: Identifying inequities in support – global survey of patient organisations delivering support services for CLL patients, HemaSphere 7(S3):p e027806b, August 2023. | DOI: 10.1097/01.HS9.0000974564.02780.6b, https://journals.lww.com/hemasphere/fulltext/2023/08003/pb1936__identifying_inequities_in_support___global.1815.aspx

Acknowledgement

We wish to thank all those groups that 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. The above reports are YOUR reports! Thank you for contributing to these important pieces of evidence!

We would furthermore like to thank the following for their support: