Lymphoma Coalition has used the results from the Global Patient Survey on Lymphomas and CLL (GPS) to conduct and publish its own research on the patient experience.
It is imperative the issues raised globally by patients through the biennial survey are conveyed to the medical and research communities to improve care moving forward.
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
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
Key findings of the research include:
• The importance of increased screening and monitoring of fatigue to improve patient outcomes.
• Insights into the variability of fatigue experiences among different lymphoma subtypes.
• The impact of treatment on fatigue, emphasizing the need for tailored patient care strategies.
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.
Cancer Related Fatigue and the Additive Effect of Treatment in the Context of Lymphoma and CLL- an analysis of Lymphoma Coalition’s 2022 Global Patient Survey
Presented at the AACR Annual Meeting from 5-10 April 2024 in San Diego, California.
Predicting Treatment Related Fatigue in the Context of Lymphoma and Chronic Lymphocytic Leukemia
Presented at the NCCN Annual Conference from 5 -7 April 2024 in Orlando, Flordia.
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 patinets 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
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
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
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
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)
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
Presented at the AACR Annual Meeting in Orlando, Florida, 14 – 19 April 2023
This study conducted a sub-analysis to rank the influence of core demographic variables in predicting barriers to lymphoma treatment during the COVID-19 pandemic in 2020 and 2022.
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
Presented during the “Best Abstract Session” at the 5th European CAR-T Cell Meeting in Rotterdam, The Netherlands, February 9-11.
The results of this study indicate that those who have received CAR-T are offered and utilise greater levels of support for their psychosocial issues than their peers who have received other non-CAR-T regimens. The inequity in patient support highlights an opportunity for improvement in the provision of interventions that can improve the psychosocial experience of those with relapsed and refractory DLBCL. While those who received CAR T are getting more support, there is still room for improvement for them as well.
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
Presented at the the International Symposium on Hodgkin Lymphoma (ISHL12) October 22-24 in Cologne, Germany
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
Presented at the ESMO Congress 2022 on September 11 2022 in Paris Expo Porte de Versailles
A Comparative Study of the impact of Countries Health Expenditure on the diagnosis experiences of patients with lymphoma and CLL in Europe.
Presented at the European Hematology Association (EHA) Congress, 9-17 June 2022 in Vienna, Austria
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
Presented at the 63rd American Society of Hematology (ASH) conference on11 December
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 on12 December
A Cross-Sectional Study Examining the Diagnosis and Psychosocial Experiences of Patients with Cutaneous Lymphomas
Presented at the European Organisation For Research and Treatment of Cancer (EORTC) conference 15 October 2021.
In collaboration with the Cutaneous Lymphoma Foundation (CLF)
A cross-sectional study examining how knowledge of genetic and biomarkers affect the information and communication experiences of patients with CLL.
Presented at the International Workshop on Chronic Lymphocytic Leukaemia (iwCLL) 2021: Sept 17-20, 2021
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
Abstract 844P Download the poster
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
39(S2), abstr 140. DOI: 10.1002/hon.52_2880
A cross-sectional study examining the impact of ageing on the psychosocial experiences of patients with lymphoma
Presented at European Hematology Association Annual Congress EHA 2021 Virtual, 9-17 June 2021
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
“This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in the top choices for medical information among patients with lymphoma, as well as differences in their understanding of this information relating to various aspects of their care”
Journal of Clinical Oncology, 39 (Suppl 15; abstr e18517). DOI: 10.1200/JCO.2021.39.15_suppl.e18517
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.
Presented at the European Bone Marrow and Transplant Group (EBMT) 47th Annual Meeting 14-17 March 2021
DOI: 10.13140/RG.2.2.16047.05283
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 DOI:10.13140/RG.2.2.30727.11681
Comparative study of information needs and support experiences of patients with lymphoma: CAR T vs non-CAR T
Presented at the EHA-EBMT 3rd European CAR T-Cell Meeting, 4-6 February 2021 DOI: 10.13140/RG.2.2.10594.45765
A cross-sectional study examining the relationship between patient information level and patient participation in healthcare decisions and health management
Blood, 136 (Suppl 1). DOI: 10.1182/blood-2020-135837
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.
Presented at the European Hematology Association Annual Congress EHA 2020 Virtual, 11 June-15 October 2020 Blood, 136 (Suppl 1). DOI: 10.1182/blood-2020-135837
Age-related lymphoma patient experience: Results from the Lymphoma Coalition 2018 Global Patient Survey.
Journal of Clinical Oncology, 38 (Suppl; abstr e20071). DOI: 10.1200/JCO.2020.38.15_suppl.e20071
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).
Blood, 134(Suppl 1), 3422. DOI: 10.1182/blood-2019-123479
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).
Blood, 134(Suppl 1), 4718. DOI: 10.1182/blood-2019-123413
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.
DOI: 10.13140/RG.2.2.14672.43522
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.
Hematological Oncology, 37(S2), 543-544. DOI: 10.1002/hon.230_2631
Presented at the 15th International Conference on Malignant Lymphoma, Lugano. Switzerland, 18-22 June
Correlation of lymphoma patient information level with healthcare experience
Blood, 132(supplement 1): 4782. DOI: 10.1182/blood-2018-99-115392
Presented at the 60th American Society of Hematology (ASH) Annual Meeting & Exposition, San Diego, CA, USA, 1-4 December 2018