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.
[{"id":39801,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/patient-perspective-psychosocial-impact-of-lymphoma-cll-treatment-global-patient-insights\/","name":"patient-perspective-psychosocial-impact-of-lymphoma-cll-treatment-global-patient-insights","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/2025-09-09-15_13_27-AACR-2025-Poster.pdf-Work-Microsoft\u200b-Edge.png","alt":""},"title":"Patient Perspective Psychosocial Impact of Lymphoma & CLL Treatment - 2024 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Apr 30, 2025","dateGMT":"2025-04-30 19:34:00","modifiedDate":"2025-10-14 14:49:19","modifiedDateGMT":"2025-10-14 14:49:19","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/global-patient-survey\/\" rel=\"category tag\">Global Patient Survey<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/global-patient-survey\/\" rel=\"category tag\">Global Patient Survey<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":4,"sec":47},"status":"publish","excerpt":"Presented during the 2025 AACR Annual Meeting on April 25-30 in Chicago, Illinois. Patients who have received treatment for lymphoma or chronic lymphocytic leukemia (CLL) experience numerous side effects which can have a profound impact on health-related quality of life (HRQoL). Some of the most underreported are adverse psycho-social outcomes (APSO). We explored the prevalence and severity of APSO\u2019s amongst a globally derived sample from this patient population."},{"id":39938,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/mapping-the-impact-of-treatment-side-effects-on-health-related-quality-of-life-in-lymphoma-and-cll-patients\/","name":"mapping-the-impact-of-treatment-side-effects-on-health-related-quality-of-life-in-lymphoma-and-cll-patients","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/2025-09-17-10_32_57-Greenshot.png","alt":""},"title":"Side-Effects and Health-Related Quality of Life in Lymphoma\/CLL - 2024 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Mar 30, 2025","dateGMT":"2025-03-30 15:01:00","modifiedDate":"2025-10-14 14:49:49","modifiedDateGMT":"2025-10-14 14:49:49","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":0},"status":"publish","excerpt":"Presented during the 2025 NCCN Annual Conference on March 28 \u2013 Sunday, March 30, 2025 at the Caribe Royale Orlando \u00b7 Orlando, FL. Our study sought to identify treatment-related side-effect drivers of health-related quality of life (HRQoL) degradation in a large sample of patients with lymphoma or chronic lymphocytic leukemia (CLL).\n\nThrough this process, we aim to provide symptom-specific information which will yield the potential for healthcare providers to employ mitigating strategies."},{"id":39947,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/psychosocial-impacts-of-age-sex-and-relapse-in-lymphoma-patients-insights-from-the-2022-global-survey\/","name":"psychosocial-impacts-of-age-sex-and-relapse-in-lymphoma-patients-insights-from-the-2022-global-survey","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/An-examination-of-the-effects-of-age-sex-and-relapse-on-the-psychosocial-wellbeing-of-patients-with-lymphoma-\u2013-an-analysis-of-the-Lymphoma-Coalitions-2022-Global-Patient-Survey.png","alt":""},"title":"Psychosocial Impacts of Age, Sex, and Relapse in Patients with Lymphoma - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Jun 16, 2024","dateGMT":"2024-06-16 15:17:00","modifiedDate":"2025-10-14 14:50:27","modifiedDateGMT":"2025-10-14 14:50:27","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":2},"status":"publish","excerpt":"Presented during the 29th Congress of the European Hematology Association\n\nfrom 13-16 June in Valencia, Spain. Psychosocial outcomes across the lymphoma spectrum are poorly understood. Demographic factors are thought to play a significant role, as does disease course and treatments received."},{"id":40010,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/barriers-to-clinical-trial-information-in-relapsed-refractory-lymphoma-patients-post-sct\/","name":"barriers-to-clinical-trial-information-in-relapsed-refractory-lymphoma-patients-post-sct","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Demographic-Barriers-to-Clinical-Trial-Information-in-RR-Lymphoma-Patients-PostSCT.png","alt":""},"title":"Demographic Barriers to Clinical Trial Information in R\/R Lymphoma Patients Post-SCT","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Apr 26, 2023","dateGMT":"2023-04-26 17:38:00","modifiedDate":"2025-10-14 14:54:06","modifiedDateGMT":"2025-10-14 14:54:06","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":46},"status":"publish","excerpt":"Presented at the 49th Annual European Society for Blood and Marrow Transplantation (EBMT) meeting, in Paris France, 22-26 April 2023. Lymphoma Coalition (LC) supports almost 90 patient organizations across more than 50 countries. LC\u2019s overarching goal is to facilitate a community of patient organizations supporting efforts to help patients with lymphoma receive optimal care and support.\n\nStem Cell Transplant (SCT) and clinical trials involving new treatments provide increased opportunities for longer-lasting remission in patients with lymphoma with relapsed or refractory disease. However, not all patients are given information or the opportunity to access clinical trials.\n\nThis study investigates the potential socioeconomic barriers to receiving information on clinical trials or the opportunity to participate in them for patients with lymphoma who have previously received SCT."},{"id":40027,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/impact-of-ageing-on-the-survivorship-experiences-of-patients-with-hodgkin-lymphoma\/","name":"impact-of-ageing-on-the-survivorship-experiences-of-patients-with-hodgkin-lymphoma","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/2025-09-17-13_44_46-Greenshot.png","alt":""},"title":"Impact of Ageing on Survivorship in Hodgkin Lymphoma","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Oct 24, 2022","dateGMT":"2022-10-24 17:54:00","modifiedDate":"2025-10-14 15:06:42","modifiedDateGMT":"2025-10-14 15:06:42","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/hodgkinlymphoma\/\" rel=\"category tag\">Hodgkin Lymphoma<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/survivorship\/\" rel=\"category tag\">Survivorship<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/hodgkinlymphoma\/\" rel=\"category tag\">Hodgkin Lymphoma<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/survivorship\/\" rel=\"category tag\">Survivorship<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":23},"status":"publish","excerpt":"Presented at the the International Symposium on Hodgkin Lymphoma (ISHL12) in Cologne, Germany, from October 22-24. Hodgkin lymphoma (HL) often affects young adults and has one of the highest cure rates among all cancers, leading to an increasing number of survivors each year.\n\nIts treatment may cause long-term or late effects, which can impact a patient\u2019s overall health and quality of life. These effects raise concerns about survivorship care and long-term management.\n\nThis study uses data from the Lymphoma Coalition (LC) 2022 Global Patient Survey (GPS) on lymphoma and CLL to examine the survivorship experiences of HL patients in remission."},{"id":40034,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/psychosocial-experiences-in-relapsed-refractory-dlbcl-car-t-vs-other-therapies\/","name":"psychosocial-experiences-in-relapsed-refractory-dlbcl-car-t-vs-other-therapies","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract_96-Psychosocial-CART-vs-non-CART-1-1.png","alt":""},"title":"Psychosocial Experiences in Relapsed\/Refractory DLBCL: CAR-T vs. Other Therapies","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Feb 11, 2022","dateGMT":"2022-02-11 18:02:00","modifiedDate":"2025-10-14 15:07:41","modifiedDateGMT":"2025-10-14 15:07:41","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":41},"status":"publish","excerpt":"Presented during the \u201cBest Abstract Session\u201d at the 5th European CAR-T Cell Meeting in Rotterdam, The Netherlands, February 9-11. Chimeric antigen receptor T-cell (CAR-T) therapy continues to expand as a treatment option for patients with relapsed\/refractory diffuse large B cell lymphoma (DLBCL). This study provides insight into the psychosocial experiences of patients with relapsed and refractory DLBCL treated with CAR-T compared to other therapies."}]