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":39534,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/impact-of-unaddressed-side-effects-on-patient-trust-in-cll-treatment-plans\/","name":"impact-of-unaddressed-side-effects-on-patient-trust-in-cll-treatment-plans","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract1.png","alt":""},"title":"Unaddressed Side-Effects and Confidence in Care Plans in Lymphoma\/CLL","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Jun 15, 2025","dateGMT":"2025-06-15 18:50:00","modifiedDate":"2025-12-09 17:00:09","modifiedDateGMT":"2025-12-09 17:00:09","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/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\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/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\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/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\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/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\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":56},"status":"publish","excerpt":"Presented during the EHA Congress on June 12-15 in Milan, Italy. Patients with lymphoma or CLL frequently experience side effects that affect their wellbeing. Managing these side effects is a crucial part of care. When left unaddressed, they can cause additional distress\u2014both physical and emotional. It is still unclear how this may affect a patient\u2019s confidence in their treatment plan.\n\nAim\nThis study examined whether patients with lymphoma or CLL who did not receive support for side effects were more likely to report low confidence in their treatment plan.\nObjective: Identify specific side effects most strongly linked to reduced confidence, providing insight into how better symptom management could improve patient experience."},{"id":39964,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/therapeutic-utilisation-trends-in-lymphoma-and-chronic-lymphocytic-leukaemia-analysis-of-the-2022-global-patient-survey\/","name":"therapeutic-utilisation-trends-in-lymphoma-and-chronic-lymphocytic-leukaemia-analysis-of-the-2022-global-patient-survey","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract12.png","alt":""},"title":"Therapeutic Utilisation in Lymphoma\/CLL - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Apr 17, 2024","dateGMT":"2024-04-17 17:02:00","modifiedDate":"2025-10-14 14:50:44","modifiedDateGMT":"2025-10-14 14:50:44","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":21},"status":"publish","excerpt":"Presented during the 50th EBMT Annual Meeting\n\nfrom 14-17 April in Glasgow, Scotland. The utilisation of autologous haematopoietic stem cell transplant (ahSCT) is one of many therapeutic options for patients with lymphoma. A gap exists in the knowledge base for the utilisation of this treatment modality from a global and pan-subtype perspective. In this study, we sought to explore the use of ahSCT and other treatment regimens from a cross-sectional view in the context of lymphoma and chronic lymphocytic leukaemia (CLL)."},{"id":39971,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/predicting-treatment-related-fatigue-in-the-context-of-lymphoma-and-chronic-lymphocytic-leukemia\/","name":"predicting-treatment-related-fatigue-in-the-context-of-lymphoma-and-chronic-lymphocytic-leukemia","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract1-2.png","alt":""},"title":"Predicting Treatment Related Fatigue in Lymphoma\/CLL","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Apr 7, 2024","dateGMT":"2024-04-07 17:08:00","modifiedDate":"2025-10-14 14:51:18","modifiedDateGMT":"2025-10-14 14:51:18","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/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\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":44},"status":"publish","excerpt":"Presented on 5 -7 April 2024 in Orlando, Flordia.\n\nPresented at the NCCN Annual ConferenceCancer-related fatigue (CRF) is highly prevalent, significantly impacts patient well-being, and is a hugely under-reported and poorly understood phenomenon.\n\nThis study aimed to build a predictive model to help identify patients at risk for CRF based on routinely collected clinical information in the context of lymphoma and chronic lymphocytic leukemia (CLL)."},{"id":39992,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/an-examination-of-health-literacy-amongst-patients-with-chronic-lymphocytic-leukemia-a-study-from-the-2022-global-patient-survey\/","name":"an-examination-of-health-literacy-amongst-patients-with-chronic-lymphocytic-leukemia-a-study-from-the-2022-global-patient-survey","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Health-Literacy-in-Chronic-Lymphocytic-Leukemia-2022-Global-Patient-Survey.png","alt":""},"title":"Health Literacy in Chronic Lymphocytic Leukemia - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Oct 9, 2023","dateGMT":"2023-10-09 17:28:00","modifiedDate":"2025-10-14 14:52:30","modifiedDateGMT":"2025-10-14 14:52:30","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/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\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":52},"status":"publish","excerpt":"Presented at the biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL) 6-9 October 2023 held in Boston, MA. Lymphoma Coalition (LC) supports over 90 member organizations across 55 countries. LC\u2019s overarching vision is equity in lymphoma outcomes across borders. Health literacy is a key aspect of efficient and meaningful communication between patients and physicians.\n\nChronic lymphocytic leukemia (CLL) can have a disease course that spans ten years or longer. The length of this course allows patients to have the opportunity to engage in shared decision-making with their primary lymphoma care provider.\n\nThis study sought to quantify health literacy using nine key terms relevant to those with CLL and to examine if core survey demographics were predictors of poor health literacy."},{"id":40004,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/understanding-the-information-needs-of-lymphoma-and-cll-patients-a-comparison-of-asia-pacific-and-europe\/","name":"understanding-the-information-needs-of-lymphoma-and-cll-patients-a-comparison-of-asia-pacific-and-europe","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Information-needs-of-lymphoma-and-CLL-patientsAsiaPacific-vs-Europe.png","alt":""},"title":"Information needs of lymphoma and CLL patients: Asia-Pacific vs. Europe","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Jun 6, 2023","dateGMT":"2023-06-06 17:34:00","modifiedDate":"2025-10-14 14:53:43","modifiedDateGMT":"2025-10-14 14:53:43","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":1,"sec":16},"status":"publish","excerpt":"Accepted for publication at the 2023 ASCO Annual Meeting in Chicago, Illinois 2-6 June 2023. Effective communication between healthcare providers and patients has improved patient\noutcomes and satisfaction. This study aims to evaluate the impact of healthcare provider-patient\ncommunication on patient satisfaction and outcomes in patients diagnosed with lymphoma and\nchronic lymphocytic leukaemia (CLL). The study utilises data from the Lymphoma Coalition (LC)\n2020 Global Patient Survey (GPS) to compare the information experiences of patients in the AsiaPacific (APAC) and European regions diagnosed with lymphoma and CLL."}]