Lymphoma Coalition publishes research on the experiences of patients and care partners based on learnings from the Global Patient Survey on Lymphomas and CLL (GPS) and other projects.
It is imperative the issues raised by patients and their care partners through the biennial survey, interviews, focus groups and other initiatives are conveyed to the medical and research communities to improve care moving forward.
Recent Research Publication: Addressing Unmet Needs in GVHD
Read the full article on The Lancet Haematology (free access until 22 April 2025):
🔗 https://bit.ly/3Xq6mfO
The article is also available on the Lymphoma Coalition website:
Published article: “Ask, do not tell: consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe,” in The Lancet Haematology.
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This study explores the unmet needs of people living with graft-versus-host disease (GVHD) across Europe, focusing on improving patient care, support, and research. The research is based on insights gathered through a Community Advisory Board (CAB) organised by Lymphoma Coalition, which brought together patients, patient advocates, and members of the European Network on Chronic Graft-Versus-Host Disease (cGVHD) EUROGRAFT. This multidisciplinary approach ensured that the study reflected a wide range of perspectives and provided actionable recommendations for enhancing GVHD management.
The article is co-authored by Lorna Warwick, CEO of Lymphoma Coalition, and Natacha Bolaños, Head of Membership & Alliances at Lymphoma Coalition, alongside other experts in the field. The Lancet Haematology encourages authors to share their research widely, and Lymphoma Coalition is pleased to make this publication available on its website to ensure broader access for the patient community, advocates, and healthcare professionals.
Lymphoma Coalition extends its gratitude to The Lancet Haematology for publishing this important study and to all contributors who helped shape this work. By amplifying patient voices and fostering collaboration, this research represents a significant step towards improving the care and support available for those affected by GVHD.
Read the full article on The Lancet Haematology (free access until 22 April 2025):
🔗 https://bit.ly/3Xq6mfO
The article is also available as a PDF, simply click the button below to download a copy:
Research from the 2024 GPS
The effect of unaddressed side effects on patient-reported confidence in care plans among patients with lymphoma or chronic lymphocytic leukemia (CLL)
The effect of unaddressed side effects on patient-reported confidence in care plans among patients with lymphoma or chronic lymphocytic leukemia (CLL)
Presented during the EHA Congress on June 12-15 in Milan, Italy.
Patient perspective on the prevalence and severity of adverse psychosocial outcomes amongst those treated for lymphoma or chronic lymphocytic leukemia – an analysis of the Lymphoma Coalition’s 2024 Global Patient Survey
Patient perspective on the prevalence and severity of adverse psychosocial outcomes amongst those treated for lymphoma or chronic lymphocytic leukemia – an analysis of the Lymphoma Coalition’s 2024 Global Patient Survey
Presented during the 2025 AACR Annual Meeting on April 25-30 in Chicago, Illinois.
Mapping patient reported side-effect incidence to degradation of health-related quality of life dimensions in lymphoma and chronic lymphocytic leukemia – a study from the Lymphoma Coalition’s 2024 Global Patient Survey on Lymphomas & CLL
Mapping patient reported side-effect incidence to degradation of health-related quality of life dimensions in lymphoma and chronic lymphocytic leukemia – a study from the Lymphoma Coalition’s 2024 Global Patient Survey on Lymphomas & CLL
Presented during the 2025 NCCN Annual Conference on March 28 – Sunday, March 30, 2025 at the Caribe Royale Orlando · Orlando, FL.
Research from the 2022 GPS
An examination of the effects of age, sex and relapse on the psychosocial wellbeing of patients with lymphoma – an analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
An examination of the effects of age, sex and relapse on the psychosocial wellbeing of patients with lymphoma – an analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
Presented during the 29th Congress of the European Hematology Association
from 13-16 June in Valencia, Spain.
Cancer related fatigue and the additive effect of treatment in the context of lymphoma: An analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
Cancer related fatigue and the additive effect of treatment in the context of lymphoma: An analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
Presented at the AACR Annual Meeting
from 5-10 April 2024 in San Diego, California.
Therapeutic Utilisation Across the Spectrum of Lymphoma and Chronic Lymphocytic Leukaemia – an analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
Therapeutic Utilisation Across the Spectrum of Lymphoma and Chronic Lymphocytic Leukaemia – an analysis of the Lymphoma Coalition’s 2022 Global Patient Survey
Presented during the 50th EBMT Annual Meeting
from 14-17 April in Glasgow, Scotland.
Predicting Treatment Related Fatigue in the Context of Lymphoma and Chronic Lymphocytic Leukemia
Predicting Treatment Related Fatigue in the Context of Lymphoma and Chronic Lymphocytic Leukemia
from 5 -7 April 2024 in Orlando, Flordia.
Presented at the NCCN Annual Conference
An Assessment Side-Effect Incidence for those Receiving CAR-T Versus Other Treatments in the Setting of Relapsed or Refractory Disease
An Assessment Side-Effect Incidence for those Receiving CAR-T Versus Other Treatments in the Setting of Relapsed or Refractory Disease
Presented at the 6th EBMT-EHA CAR-T Cell Meeting
from 15-17 February 2023 in Valencia, Spain.
An examination of aggregate side-effects mapped to therapies experienced by patients with relapsed larger B-Cell lymphomas – An analysis from the Lymphoma Coalition’s 2022 Global Patient Survey.
An examination of aggregate side-effects mapped to therapies experienced by patients with relapsed larger B-Cell lymphomas – An analysis from the Lymphoma Coalition’s 2022 Global Patient Survey.
Presented at the 65th ASH Annual Meeting and Exposition
from 9-12 December 2023, in San Diego, California.
A Cross-Sectional Examination of Information Disclosure and Health Literacy Amongst Patients with Lymphoma
A Cross-Sectional Examination of Information Disclosure and Health Literacy Amongst Patients with Lymphoma
Presented at the ESMO Congress in Madrid, Spain
from 20-24 October 2023.
An Examination of Health Literacy Amongst Patients with Chronic Lymphocytic Leukemia – A study from The Lymphoma Coalition Global Patient Survey 2022
An Examination of Health Literacy Amongst Patients with Chronic Lymphocytic Leukemia – A study from The Lymphoma Coalition Global Patient Survey 2022
Presented at the biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL) 6-9 October 2023 held in Boston, MA.
An Investigation Into the Preferences of Patients Regarding the Use of Telemedicine Stemming From the COVID-19 Pandemic
An Investigation Into the Preferences of Patients Regarding the Use of Telemedicine Stemming From the COVID-19 Pandemic
Accepted for publication at the EHA 2023 Hybrid Congress in Frankfurt, Germany
from 8-11 June 2023.
Understanding the information needs of lymphoma and CLL patients: A comparison of Asia-Pacific and Europe
Understanding the information needs of lymphoma and CLL patients: A comparison of Asia-Pacific and Europe
Accepted for publication at the 2023 ASCO Annual Meeting in Chicago, Illinois
2-6 June 2023.
A Cross-Sectional Study Examining Potential Demographic Barriers to Receiving Information on Clinical Trials in Relapsed/Refractory Patients Who Have Received Stem Cell Transplants (SCT)
A Cross-Sectional Study Examining Potential Demographic Barriers to Receiving Information on Clinical Trials in Relapsed/Refractory Patients Who Have Received Stem Cell Transplants (SCT)
Presented at the 49th Annual European Society for Blood and Marrow Transplantation (EBMT) meeting, in Paris France, 22-26 April 2023
Identifying Factors that Affect Barriers to Lymphoma Treatment during the COVID-19 Pandemic
Identifying Factors that Affect Barriers to Lymphoma Treatment during the COVID-19 Pandemic
Presented at the AACR Annual Meeting in Orlando, Florida
14 – 19 April 2023
Patient Reported Experience with Fatigue, a Cross-Sectional Study Examining Indolent and Aggressive Lymphomas
Patient Reported Experience with Fatigue, a Cross-Sectional Study Examining Indolent and Aggressive Lymphomas
Presented at the American Society of Hematology (ASH) symposium in New Orleans
December 10-13 2022.
Impact of Ageing on the Survivorship Experiences of Patients with Hodgkin Lymphoma
Impact of Ageing on the Survivorship Experiences of Patients with Hodgkin Lymphoma
Presented at the the International Symposium on Hodgkin Lymphoma (ISHL12) in Cologne, Germany, from October 22-24
A cross-sectional study of psychosocial experiences in patients with relapsed / refractory diffuse large b cell (DLBCL) who received CAR-T compared to other therapies
A Cross-Sectional Study Examining Potential Demographic Barriers to Receiving Information on Clinical Trials in Relapsed/Refractory Patients Who Have Received Stem Cell Transplants (SCT)
Presented during the “Best Abstract Session” at the 5th European CAR-T Cell Meeting in Rotterdam, The Netherlands, February 9-11.
Research from the 2020 GPS
A comparative study of the impact of countries – health expenditure on the support experiences of patients with lymphoma and CLL in Europe
Identifying Factors that Affect Barriers to Lymphoma Treatment during the COVID-19 Pandemic
Presented at the ESMO Congress 2022 in Paris Expo Porte de Versailles
on September 11 2022
A comparative study of the impact of countries’ health expenditure on the diagnosis of experiences of patients with lymphoma and CLL in Europe
Identifying Factors that Affect Barriers to Lymphoma Treatment during the COVID-19 Pandemic
Presented during the “Best Abstract Session” at the 5th European CAR-T Cell Meeting in Rotterdam, The Netherlands, February 9-11.
A Comparative Study of Unmet Information Needs of Patients with Lymphoma and CLL: North America and Europe
Submitted for the American Society of Clinical Oncology (ASCO) 2022 Annual Meeting, 3-7 June 2022 in Chicago. IL Abstract #12135
The top three areas of unmet information need for patients with lymphoma and CLL in both regions were: diagnosis and what it means, treatment options, and side effects from treatment. Compared to patients in the EU, patients in NA were 27% more likely to need more information about treatment options, 51% more likely to need more information about support for self-care, and 18% less likely to need more information about their diagnosis and what it means. These differences were statistically significant. There was no significant difference between patients in both regions in their need for more information in the following areas: psychological support, support for their families, side effects from treatment and fertility.
A Comparative Study of Healthcare Decision-Making in Patients with DLBCL: CAR-T vs non-CAR-T
The 4th European CAR T-cell Meeting, jointly organized by the European Hematology Association and the EBMT, holding Feb 10-12, 2022
Lymphoma Coalition provides insight into the healthcare decision-making experience of patients with diffuse large B-cell lymphoma (DLBCL) who have been treated with CAR-T therapy in comparison to those who have not been treated with CAR-T therapy, using the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL. The results show that CAR-T patients would like to be more involved in the decision-making process of their healthcare, but few patients are having the conversations with their doctors needed to achieve this goal.
Lymphoma Coalition advocates for better engagement of patients with their CAR-T providers, to ensure that stronger patient-centred healthcare is provided.
Age-Related Differences in the Informational Experiences and Needs of Patients with Lymphoma: Results from the 2020 Lymphoma Coalition Global Patient Survey
Age-Related Differences in the Informational Experiences and Needs of Patients with Lymphoma: Results from the 2020 Lymphoma Coalition Global Patient Survey
Presented at the 63rd American Society of Hematology (ASH) conference on 11 December
A comparative analysis of patient experience and patient-doctor communication in patients with lymphoma and CLL: Clinical trials versus non-Clinical trials
A comparative analysis of patient experience and patient-doctor communication in patients with lymphoma and CLL: Clinical trials versus non-Clinical trials
Presented at the 63d American Society of Hematology (ASH) conference on 12 December
ARCHIVE
Barriers to treatment for patients with lymphoma across Europe: Upper middle income versus high income countries
Barriers to treatment for patients with lymphoma across Europe: Upper middle income versus high income countries
Presented at the European Society for Medical Oncology (ESMO) Congress 2021: Sep 16-21 2021
A cross-sectional study on the global differences in information experiences and needs of patients with lymphoma and CLL. Hematological Oncology
A cross-sectional study on the global differences in information experiences and needs of patients with lymphoma and CLL. Hematological Oncology
Presented at the 16th International Conference on Malignant Lymphoma, Virtual Edition, 18-22 June 2021
A cross-sectional study of the side-effects profile and patient-doctor communication about side effects in patients with lymphoma treated with CAR-T therapy
A cross-sectional study of the side-effects profile and patient-doctor communication about side effects in patients with lymphoma treated with CAR-T therapy
Presented at the EHA-EBMT 3rd European CAR T-Cell Meeting, 4-6 February 2021
A cross-sectional study on global disparities in information experiences of patients with lymphoma/CLL.
A cross-sectional study on global disparities in information experiences of patients with lymphoma/CLL.
Presented at the 57th American Society of Clinical Oncology (ASCO) 2021 Annual Meeting, 4-8 June 2021
A cross-sectional study examining the diagnosis and psychosocial experiences of patients with cutaneous lymphomas.
A cross-sectional study examining the diagnosis and psychosocial experiences of patients with cutaneous lymphomas.
Presented at the International Society of Cutaneous Lymphoma (ISCL) Scientific Meeting & Annual General Meeting, 1 May 2021
A cross-sectional study of the psychosocial issues experienced by patients with lymphoma treated with stem cell transplant.
A cross-sectional study of the psychosocial issues experienced by patients with lymphoma treated with stem cell transplant.
Presented at the European Bone Marrow and Transplant Group (EBMT) 47th Annual Meeting 14-17 March 2021
A cross-sectional study examining the relationship between patient information level and patient participation in healthcare decisions and health management
A cross-sectional study examining the relationship between patient information level and patient participation in healthcare decisions and health management
Presented at the 62nd American Society of Hematology (ASH) Annual Meeting & Exposition, 5-8 December 2020
Research from the 2018 GPS
A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication.
A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication.
Presented at the European Hematology Association Annual Congress EHA 2020 Virtual, 11 June-15 October 2020
Age-related lymphoma patient experience: Results from the Lymphoma Coalition 2018 Global Patient Survey.
Age-related lymphoma patient experience: Results from the Lymphoma Coalition 2018 Global Patient Survey.
Presented at the 56th American Society of Clinical Oncology (ASCO) Annual Meeting, 29 May-2 June 2020
A cross-sectional study examining the effects of patient information level on healthcare experience in 2 patient populations: Extranodal natural killer T-cell lymphoma (ENKTL) and Waldenstrom Macroglobulinemia (WM).
A cross-sectional study examining the effects of patient information level on healthcare experience in 2 patient populations: Extranodal natural killer T-cell lymphoma (ENKTL) and Waldenstrom Macroglobulinemia (WM).
Presented at the 61st American Society of Hematology (ASH) Annual Meeting & Exposition, Orlando, FL, USA, 7-10 December 2019
A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication: Follicular lymphoma (FL) and diffuse large B-cell lymphoma (DLBCL).
A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication: Follicular lymphoma (FL) and diffuse large B-cell lymphoma (DLBCL).
Presented at 61st American Society of Hematology (ASH) Annual Meeting & Exposition, Orlando, FL, USA, 7-10 December 2019
A comparative analysis of CLL and DLBCL patients’ level of understanding after initial doctor’s appointment.
A comparative analysis of CLL and DLBCL patients’ level of understanding after initial doctor’s appointment.
Presented at the XVIII International Workshop on CLL (iwCLL), Edinburgh, Scotland, 20-23 September 2019
A cross-sectional study examining how knowledge of lymphoma subtype affects the patient experience.
A cross-sectional study examining how knowledge of lymphoma subtype affects the patient experience.
Presented at the 15th International Conference on Malignant Lymphoma, Lugano. Switzerland, 18-22 June
Correlation of lymphoma patient information level with healthcare experience
Correlation of lymphoma patient information level with healthcare experience
Presented at the 60th American Society of Hematology (ASH) Annual Meeting & Exposition, San Diego, CA, USA, 1-4 December 2018
The Knowledge Age: Better Outcomes for the Informed Patient
The Knowledge Age: Better Outcomes for the Informed Patient
Presented November 2017