This report “CLL patients and Carers: Unmet needs in Healthcare and Support” provides a comparison analysis of some findings from three separate surveys conducted in 2021 and 2022 of individuals with CLL and their carers about their experiences, and with patient organisations from across the globe about CLL resources provided and unmet needs. Based on the resulting recommendations, CLLAN has created a strategic plan of priority activities to tackle the identified unmet needs.
The analysis was based on the results of the CLL Patient Advocacy and Support Survey (CLL-PAGS) conducted by CLLAN in 2021, the Global Leukemia Patient Experience Survey (GPES) conducted in 2021/22 and the Global Leukemia Carer Experience Survey (GCES) conducted in 2022. The latter two were conducted in collaboration with two partner networks: Acute Leukemia Advocates Network (ALAN) and CML Advocates Network (CMLAN). For the latter two surveys, the analysis concentrates on data relating to CLL patients only (a subset of the wider data across different leukemia types).
In total, the surveys reached people and organisations across 40 countries using questionnaires available in ten languages, and online only. Responses were obtained from a total of 1202 patients, 137 carers and 57 support organisations. Global recruitment was done through patient organisations, email, online forums, newsletter, and social media. Survey design was developed through literature review, patient advisory session and expert panel insights. The fieldwork of the CLL-PAGS was conducted for 12 weeks closing in August 2021. The GPES was open between September and November 2021, while the GCES was conducted between June and October 2022.
The review of the results of the three surveys identified areas of comparison that matched the objectives of this report. The results of the areas from the three surveys were then described, analysed and interpreted to meet the aims of the report and provide potential recommended actions. For the analysis, countries were segmented into low-and-middle-income countries (LMIC) and high-income countries (HIC) according to the Organisation for Economic Co-operation and Development´s (OECD) DAC list of ODA recipients.
The comparison analysis of the findings shows that:
- Overall, patients and carers would like to have more choice in their treatment decisions, increased access to clinical trials and better information and support across the whole of their patient journey.
- Understanding the unique unmet needs and gaps in provision, will help the wider healthcare and support providers to strategically target the development of current services most beneficial to patients and carers.
- Support particularly targeted at the different patient profiles in different countries will also help to reduce the current disparity across the whole landscape of CLL.
- There is opportunity globally to improve collaboration and connection between patient organisations and treating teams to address the gaps in need and support the whole life experience of CLL.
SURVEY REPORT & RECOMMENDATIONS
The above 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, as well as >1200 patients and >130 carers who were willing to complete the surveys. CLLAN thanks everybody – individuals and organisations – for their contribution to this evidence and hopes these summaries assist organisations in determining their own priorities!
USAGE OF SURVEY COMPARISON FINDINGS
The recommended actions link with the recommended actions in the CLLAN-PAG Survey Report: “Resource Mapping and Unmet Needs Survey: Service Provision and Impact of COVID-19.” The most important factor in managing the current gaps in service and unmet needs is to promote and foster engagement between network organisations and local healthcare providers, researchers and pharmaceutical companies.
To show that we are acting on the recommendations, CLLAN is participating as Faculty for Session 10 (“Global Perspective on CLL Management – Real World Data and Patient Experiences” – Session Co-Chair: Anna Schuh, MD, PhD) at iwCLL 2023 taking place in Boston / USA from 6 to 9 October 2023.
We have furthermore submitted abstracts on different aspects of the survey comparison report to two main scientific congresses:
- iwCLL 2023 – Abstract title: “Global Perspectives through multi stakeholder mapping of lived experience with CLL – insights to improve equity, services, and unmet need”. Status: abstract accepted for poster.
- ASH 2023 – Abstract title: “Global perspectives of lived experience with CLL – patient and support group reported insights of access, treatment, and unmet needs”. Status: abstract acceptance pending.
We wish to thank all those groups and individuals that took the time to complete any of the three surveys that allowed us carry out this comparison analysis. 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: