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
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
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)
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 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 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
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.
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