Every two years, the Lymphoma Coalition (LC) circulates its Global Patient Survey on Lymphomas & CLL (GPS) through its member organizations for their constituents’ participation. The survey was first introduced in 2008 and “seeks to understand patient experience in lymphomas as well as the impact of treatment and care.”1
This collected patient/care partner data allows the Coalition and its member organizations to more accurately represent the impact of living with lymphoma or CLL when working with health care professionals, researchers, industry and others. The information is also invaluable when speaking with policymakers, as the CL Foundation does in its advocacy efforts.
What is the value of this patient and care partner reported data?
While global analysis provides an overall view of the patient/care partner experience, countries with 100 respondents or more prompt a region specific data analysis so reported issues can be addressed on a local level. Additionally, the results from past surveys have been published in research papers and included in medical conference presentations and posters to broaden the knowledge of medical professionals, researchers and industry to the real impact lymphomas have on patient lives.
1 Lymphoma Coalition. (2023). Global Patient Survey. https://lymphomacoalition.org/global-patient-survey/
After 10 weeks of availability, the 2024 Global Patient Survey on Lymphomas & CLL closed with a final number of 11,170 responses collected across all types of lymphoma and CLL. The Lymphoma Coalition will work through the data to develop meaningful reports to ensure that the voices of those impacted by lymphoma and CLL are accurately represented in the work it does moving forward.
We are very grateful for everyone within the cutaneous lymphoma community who participated in the survey. Over 300 individuals responded, making us eligible to receive an independent report of the cutaneous lymphoma data. This information is invaluable in informing researchers and clinicians of the realities of living with the disease, and can help impact research, treatments, and patient care.
An important discovery from the 2024 survey results was the emotional impact of living with a lymphoma or CLL diagnosis.
According to 2024 Global Patient Survey, two-thirds of people (67%) said they had experienced emotional effects in the past six months, including fear of cancer relapse or progression (46%), anxiety (35%), depression (27%) and isolation (26%). What’s more, most of these people are not talking to their medical teams about how they are feeling or seeking help.
This outcome led to the Coalition to choose "It's Time To Talk About How We're Feeling" as their theme for World Lymphoma Day 2024. The Cutaneous Lymphoma Foundation participated in the campaign in order to bring attention to how cutaneous lymphoma may impact how people with disease feel emotionally, not just physically. As the Coalition has shared on their website, "...having honest conversations can help. Honest conversations between people with lymphoma and their healthcare team can help address emotional concerns and connect patients to specialists and resources. Speaking honestly with family and friends can help them understand what you’re feeling and can foster better, more supportive relationships."
Lorna Warwick, CEO of the Lymphoma Coalition, presented cutaneous lymphoma-specific outcomes from the 2022 Global Patient Survey at the CL Foundation’s 2022 International Patient Conference. 518 individuals with cutaneous lymphoma representing 29 countries responded to the survey, as did 53 caregivers.
Some of the survey findings include:
- Almost 50% of the respondents waited 12 months or more to seek medical care after originally experiencing symptoms.
- Unique to cutaneous lymphoma when compared to the other lymphomas, for almost 50% of the respondents, it took 12 months or more after their initial medical appointment to be formally diagnosed - partially due to the similarity of the symptoms to other conditions.
- 66% of the respondents were given a different diagnosis before their CL was confirmed.
- Symptoms that most affected quality of life were skin rashes/lesions, itchy skin and fatigue. Fatigue showed up as both a symptom of the disease and the number one side effect of treatment.
You can watch Ms. Warwick's full presentation here.
Results from the 2022 survey were also presented at the following medical conference:
2022 American Society of Hematology (ASH) Annual Meetings*
*Lymphoma Coalition. (2023). Lymphoma Coalition Research. https://lymphomacoalition.org/lymphoma-coalition-research/
Over 500 cutaneous lymphoma patients/care partners participated in the 2020 Global Patient Survey.
Results from the 2020 survey were presented at the following medical conferences:
2021 European Organisation For Research and Treatment of Cancer (EORTC) - Cutaneous Lymphoma Taskforce Conference
2021 American Society of Hematology (ASH) Annual Meetings*
A comparative analysis of patient experience and patient-doctor communication in patients with lymphoma and CLL: Clinical trials versus non-Clinical trials - December 2021
Age-Related Differences in the Informational Experiences and Needs of Patients with Lymphoma: Results from the 2020 Lymphoma Coalition Global Patient Survey - December 2021
*Lymphoma Coalition. (2023). Lymphoma Coalition Research. https://lymphomacoalition.org/lymphoma-coalition-research/
The 2018 Global Patient Survey went live in January 2018 and closed in March 2018. It was prepared and made available in 19 languages through at least 65 patient organisations’ social media, the Lymphoma Hub, scientific partners, INTERLYMPH, and a small portion of the healthcare community. Overall, 203 cutaneous lymphoma patients and caregivers from all over the world took part in the LC survey.
The Institute of Applied Biosciences at CERTH, the Centre for Research and Technology Hellas (INAB|CERTH), performed the analysis of the submitted data. Because over 100 individuals affected by cutaneous lymphoma responded, the INAB|CERTH provided a cutaneous lymphoma sub report presenting an overview of the responses provided in the 2018 survey.