We are pleased to announce that the long-awaited Survey Comparison Report “CLL patients and Carers: Unmet needs in Healthcare and Support” is now published and released on our website.
The report 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.
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).
The report helps inform the CLL Advocates Network´s strategy to continue to support the needs of our global community and areas to improve outcomes for people living with Chronic Lymphocytic Leukemia (CLL).
We’re grateful to the 57 organisations representing 40 countries globally and the more than 1200 patients and more than 130 carers who were willing to complete the surveys. This participation from diverse cultures, economies, and health systems, provides CLL Advocates Network with insights to support our global network.
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. These changes will ultimately save lives.
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!