In 2008, LC launched its first Global Patient Survey on Lymphomas & CLL (GPS). It has been conducted every two years since. The survey seeks to understand patient experience in lymphomas as well as the impact of treatment and care. LC and its global members use results to ensure patient voices are heard, to drive planning, actions and support.
Why do we do this research?
Lymphoma Coalition is committed to bringing equity in lymphoma across borders. To do this, we must accurately represent the current voices and values of patients and their caregivers when we work with healthcare professionals, researchers, industry and others. This knowledge is gathered through the Global Patient Survey.
In addition, the results of past surveys have been used to inform published research papers, conference presentations and posters, patient resources, education materials and World Lymphoma Awareness Campaigns.
The results of the GPS are shared in a Global Report, as well as regional reports.
When 100 or more participants complete the survey from one country, a Country Report is created that highlights the findings, which can be used for local planning to ensure activities align with patients’ needs, as well as other advocacy efforts as needed. In addition, Lymphoma Coalition can support member organisations with data needs for therapy approvals.
It is through partnership with member organisations that we can successfully gather the experiences and insights of patients and caregivers around the world.
2022 Global Patient Survey on Lymphoma & CLL
In 2022, the GPS was redesigned to include patient and caregiver-specific questions, expanded questions on healthcare information, involvement and decision-making, and new questions on the impact of Covid-19. Member organisations in countries with 100+ responses to the previous survey (LC 2020 GPS) were invited to add up to five additional country-specific questions that addressed their local issues and concerns. Two subtype-specific member organisations had the same invitation.
The results in this report present the data from all worldwide respondents.
The overall number of completed responses was 8637, made up of:
7113 Patients 1524 Caregivers
The following reports are available:
2020 Global Patient Survey on Lymphoma & CLL
The 2020 GPS had two streams – one for patients and one for caregivers. There was an excellent response, with 11,878 responses globally comprised of 9,179 patients and 2,699 caregivers. 18 countries had over 100 responses, and member organisations within these countries are provided with this data to help them in their own planning and advocacy work. Separate reports were also created for cutaneous lymphomas, chronic lymphocytic leukaemia (CLL) and Waldenstrom’s macroglobulinemia.
The following reports are available:
Survey data has been used for posters and presentations at a number of scientific conferences.
To review results from past year’s surveys, please contact the Marketing Coordinator.