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":41545,"link":"https:\/\/lymphomacoalition.org\/variances-in-patient-reported-experiences-with-shared-decision-making-by-biological-sex-in-patients-with-diffuse-large-b-cell-lymphoma-dlbcl-an-analysis-from-the-lymphoma-coalition-2024-gl\/","name":"variances-in-patient-reported-experiences-with-shared-decision-making-by-biological-sex-in-patients-with-diffuse-large-b-cell-lymphoma-dlbcl-an-analysis-from-the-lymphoma-coalition-2024-gl","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Variances-In-Patient-Reported-Experiences-with-Shared-Decision-Making.png","alt":""},"title":"Variances In Patient-Reported Experiences with Shared Decision-Making By Biological Sex in Patients with Diffuse Large B-Cell Lymphoma (DLBCL) \u2013 An Analysis from the Lymphoma Coalition 2024 Global Patient Survey on Lymphomas And CLL","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 9, 2025","dateGMT":"2025-12-09 18:01:30","modifiedDate":"2025-12-11 19:04:41","modifiedDateGMT":"2025-12-11 19:04:41","commentCount":"0","commentStatus":"closed","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/\" rel=\"category tag\">Communication & Decision-Making<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/shareddecision-making\/\" rel=\"category tag\">Shared Decision-Making<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/\" rel=\"category tag\">Communication & Decision-Making<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/shareddecision-making\/\" rel=\"category tag\">Shared Decision-Making<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":30},"status":"publish","excerpt":"Presented during the ASH Annual Meeting on December 6 in Orlando, Florida.\nShared decision-making (SDM) is essential to patient-centred care, yet experiences vary significantly among people with diffuse large B-cell lymphoma (DLBCL). This analysis from the 2024 Global Patient Survey found important differences by biological sex: male respondents more often reported feeling highly involved, encouraged to ask questions, and offered multiple treatment options, while female respondents were more likely to prefer making final decisions themselves. Despite these differences, only half of all respondents\u2014regardless of sex\u2014felt adequately involved in treatment decisions, highlighting clear gaps in SDM that require attention in clinical practice."},{"id":41524,"link":"https:\/\/lymphomacoalition.org\/evolving-patient-reported-value-of-treatment-attributes-in-follicular-lymphoma-insights-from-the-lymphoma-coalition-2024-global-patient-survey-on-lymphomas-and-cll\/","name":"evolving-patient-reported-value-of-treatment-attributes-in-follicular-lymphoma-insights-from-the-lymphoma-coalition-2024-global-patient-survey-on-lymphomas-and-cll","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Evolving-Patient-Reported-Value-of-Treatment-Attributes-in-Follicular-Lymphoma-Insights-From-the-Lymphoma-Coalition-2024-GPS.png","alt":""},"title":"Evolving Patient-Reported Value of Treatment Attributes in Follicular Lymphoma: Insights from the Lymphoma Coalition 2024 Global Patient Survey on Lymphomas And CLL","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 9, 2025","dateGMT":"2025-12-09 17:02:55","modifiedDate":"2025-12-09 17:59:18","modifiedDateGMT":"2025-12-09 17:59:18","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":7},"status":"publish","excerpt":"Presented during the ASH Annual Meeting on December 6 in Orlando, Florida.\nFollicular lymphoma (FL) is a chronic, incurable lymphoma marked by repeated cycles of treatment and remission. As individuals move through multiple lines of therapy, the cumulative burden of symptoms, side effects, and treatment demands can influence what they value most in their care. Understanding how these priorities shift is essential to ensure treatment decisions remain aligned with patient expectations and lived experience.\n\nAim\nThis study explored how people with lived experience of FL prioritise key treatment attributes across different stages of their disease.\n\nObjective: Identify how the importance of clinical outcomes, quality of life, and practical treatment considerations changes over time, offering insights to support more responsive, patient-centred care planning."},{"id":40125,"link":"https:\/\/lymphomacoalition.org\/recent-research-publication-bridging-gaps-in-clinical-trial-accessibility-and-reimbursement-for-large-b-cell-lymphoma-therapies-across-europe\/","name":"recent-research-publication-bridging-gaps-in-clinical-trial-accessibility-and-reimbursement-for-large-b-cell-lymphoma-therapies-across-europe","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/HeamSphere.jpg","alt":""},"title":"Recent Research Publication: Bridging gaps in clinical trial accessibility and reimbursement for large B-cell lymphoma therapies across Europe","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Sep 26, 2025","dateGMT":"2025-09-26 15:17:21","modifiedDate":"2025-10-14 14:47:33","modifiedDateGMT":"2025-10-14 14:47:33","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/n-a\/\" rel=\"category tag\">N\/A<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/n-a\/\" rel=\"category tag\">N\/A<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":1,"sec":0},"status":"publish","excerpt":"Published article: \u201cBridging gaps in clinical trial accessibility and reimbursement for large B-cell lymphoma therapies across Europe,\u201d in HemaSphere.\n\nThis publication examines the unmet need in large B-cell lymphoma (LBCL) across Europe, focusing on how clinical innovation translates into access for patients. The analysis maps disparities in clinical trial availability and national reimbursement for EMA-approved therapies, and highlights barriers such as limited trial reach, time to access, and the underuse of real-world evidence (RWE) and patient-reported outcomes (PROs). The paper offers practical recommendations to improve adoption and ensure that standards of care are implemented consistently across health systems."},{"id":40065,"link":"https:\/\/lymphomacoalition.org\/recent-research-publication-addressing-unmet-needs-in-gvhd\/","name":"recent-research-publication-addressing-unmet-needs-in-gvhd","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/GVHD-CABTheLancet-Publication-LinkedIn.png","alt":""},"title":"Recent Research Publication: Addressing Unmet Needs in GVHD","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Jul 31, 2025","dateGMT":"2025-07-31 18:40:00","modifiedDate":"2025-10-14 14:48:07","modifiedDateGMT":"2025-10-14 14:48:07","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":1,"sec":17},"status":"publish","excerpt":"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."},{"id":39534,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/wp-content\/uploads\/Abstract1.png","alt":""},"title":"Unaddressed Side-Effects and Confidence in Care Plans in Lymphoma\/CLL","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":39801,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/global-patient-survey\/\" rel=\"category tag\">Global Patient Survey<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/global-patient-survey\/\" rel=\"category tag\">Global Patient Survey<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":39964,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/wp-content\/uploads\/Abstract12.png","alt":""},"title":"Therapeutic Utilisation in Lymphoma\/CLL - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":39953,"link":"https:\/\/lymphomacoalition.org\/treatment-impact-on-fatigue-among-lymphoma-patients-global-survey-findings\/","name":"treatment-impact-on-fatigue-among-lymphoma-patients-global-survey-findings","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Abstract1-1.png","alt":""},"title":"Treatment Impact on Fatigue Among Lymphoma Patients - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Apr 10, 2024","dateGMT":"2024-04-10 16:56:00","modifiedDate":"2025-10-14 14:51:00","modifiedDateGMT":"2025-10-14 14:51:00","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":10,"sec":48},"status":"publish","excerpt":"Presented at the AACR Annual Meeting\nfrom 5-10 April 2024 in San Diego, California. Cancer related fatigue (CRF) continues to be a challenging phenomenon that is often\nunder-reported and poorly understood. With etiologies in both disease and treatment\nmanifesting as a symptom and a side-effect respectively, CRF is highly incident and\npresents a significant clinical problem that impacts survivorship. We conducted a survey\nto ascertain the patient reported incidence of symptoms and side-effects for people with\nlymphoma or chronic lymphocytic leukemia (CLL)."},{"id":39971,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/wp-content\/uploads\/Abstract1-2.png","alt":""},"title":"Predicting Treatment Related Fatigue in Lymphoma\/CLL","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":39981,"link":"https:\/\/lymphomacoalition.org\/mapping-therapy-related-side-effects-in-relapsed-large-b-cell-lymphoma\/","name":"mapping-therapy-related-side-effects-in-relapsed-large-b-cell-lymphoma","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Abstract1-3.png","alt":""},"title":"Side-Effects in Relapsed Large B-Cell Lymphoma - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 12, 2023","dateGMT":"2023-12-12 17:21:00","modifiedDate":"2025-10-14 14:51:30","modifiedDateGMT":"2025-10-14 14:51:30","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/treatment\/\" rel=\"category tag\">Treatment<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/treatment\/\" rel=\"category tag\">Treatment<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":57},"status":"publish","excerpt":"Presented at the 65th ASH Annual Meeting and Exposition\n\nfrom 9-12 December 2023, in San Diego, California. The identification of side-effects associated with a particular therapy relies on univariable assessments of incidence across treatment arms. While this approach serves to set the groundwork for the establishment of causation, it is suboptimal when the incidence is small or when novel therapeutics with limited deployment are being examined.\n\nIn this study, we used a multivariate approach to aggregate multiple symptoms in order to segment our sample into those who had differing degrees of side-effect incidence. We used the resultant strata to examine the use of various therapies."},{"id":39987,"link":"https:\/\/lymphomacoalition.org\/a-cross-sectional-examination-of-information-disclosure-and-health-literacy-amongst-patients-with-lymphoma\/","name":"a-cross-sectional-examination-of-information-disclosure-and-health-literacy-amongst-patients-with-lymphoma","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Information-Disclosure-and-Health-Literacy-in-Patients-with-Lymphoma.png","alt":""},"title":"Information Disclosure and Health Literacy in Patients with Lymphoma","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Oct 24, 2023","dateGMT":"2023-10-24 17:24:00","modifiedDate":"2025-10-14 14:51:47","modifiedDateGMT":"2025-10-14 14:51:47","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":4,"sec":11},"status":"publish","excerpt":"Presented at the ESMO Congress in Madrid, Spain from 20-24 October 2023. Lymphoma Coalition (LC) supports over 90 member organizations across more than 55 countries. LC\u2019s overarching vision is equity in lymphoma outcomes across borders.\n\nHealth literacy of patients is a requirement for shared decision making. However, little is known about the experiences of patients with lymphoma with regard to health literacy and information disclosure from their treating physicians.\n\nWe sought to explore health literacy through a survey deployed across a large and diverse group of patients with lymphoma."},{"id":39992,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":39998,"link":"https:\/\/lymphomacoalition.org\/an-investigation-into-the-preferences-of-patients-regarding-the-use-of-telemedicine-stemming-from-the-covid-19-pandemic\/","name":"an-investigation-into-the-preferences-of-patients-regarding-the-use-of-telemedicine-stemming-from-the-covid-19-pandemic","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Patient-Preferences-for-Telemedicine-During-the-COVID19-Pandemic.png","alt":""},"title":"Patient Preferences for Telemedicine During the COVID-19 Pandemic","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Jun 11, 2023","dateGMT":"2023-06-11 17:31:00","modifiedDate":"2025-10-14 14:52:48","modifiedDateGMT":"2025-10-14 14:52:48","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/covid\/\" rel=\"category tag\">COVID<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/covid\/\" rel=\"category tag\">COVID<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":13},"status":"publish","excerpt":"Accepted for publication at the EHA 2023 Hybrid Congress in Frankfurt, Germany from 8-11 June 2023. Telemedicine has become increasingly crucial for remote healthcare delivery, with telephone consultation (TC) and video consultation (VC) being two important modalities. However, there is limited knowledge about the preferences and experiences of patients with lymphoma or CLL (chronic lymphocytic leukemia). Understanding patient preferences and experiences is vital for successfully integrating telemedicine into clinical practice beyond the COVID-19 pandemic."},{"id":40004,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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."},{"id":40010,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":40016,"link":"https:\/\/lymphomacoalition.org\/identifying-factors-that-affect-barriers-to-lymphoma-treatment-during-the-covid-19-pandemic\/","name":"identifying-factors-that-affect-barriers-to-lymphoma-treatment-during-the-covid-19-pandemic","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Barriers-to-Lymphoma-Treatment-during-the-COVID-19-Pandemic.png","alt":""},"title":"Barriers to Lymphoma Treatment during the COVID-19 Pandemic","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Apr 19, 2023","dateGMT":"2023-04-19 17:44:00","modifiedDate":"2025-10-14 14:58:39","modifiedDateGMT":"2025-10-14 14:58:39","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/covid\/\" rel=\"category tag\">COVID<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/covid\/\" rel=\"category tag\">COVID<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":7},"status":"publish","excerpt":"Presented at the AACR Annual Meeting in Orlando, Florida 14 \u2013 19 April 2023. Lymphoma Coalition (LC) supports over 80 patient organizations across more than 50 countries. LC's overarching goal is to facilitate a community of patient organizations supporting efforts to help patients with lymphoma receive care and support.\n\nBarriers to accessing treatment therapy for patients with lymphoma are an essential topic across the globe.\n\nLC's biennial Global Patient Survey (GPS) aims to understand the barriers faced by patients with lymphoma in seeking medical attention or accessing treatment. With the added challenge posed by the COVID-19 pandemic, this study aimed to rank the influence of core demographic variables in their ability to predict barriers to lymphoma treatment in 2020 and 2022."},{"id":39976,"link":"https:\/\/lymphomacoalition.org\/an-assessment-side-effect-incidence-for-those-receiving-car-t-versus-other-treatments-in-the-setting-of-relapsed-or-refractory-disease\/","name":"an-assessment-side-effect-incidence-for-those-receiving-car-t-versus-other-treatments-in-the-setting-of-relapsed-or-refractory-disease","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/assessment-side-effect-incidence-cart-abstract.png","alt":""},"title":"Side-Effect Incidence in CAR-T vs. Other Treatments in R\/R Disease","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Feb 17, 2023","dateGMT":"2023-02-17 17:16:00","modifiedDate":"2025-10-14 15:05:58","modifiedDateGMT":"2025-10-14 15:05:58","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":55},"status":"publish","excerpt":"Presented at the 6th EBMT-EHA CAR-T Cell Meeting from 15-17 February 2023 in Valencia, Spain. Lymphoma Coalition (LC) supports over 90 member organizations across 54 countries. LC\u2019s overarching vision is equity in lymphoma outcomes across borders.\n\nIn the setting of relapsed\/refractory lymphoma, patients will have experienced at least one line of therapy and will likely be facing another to prolong life. CAR-T is gaining traction as a novel approach to treat relapsed\/refractory disease. Due to the novelty of CAR-T use, a knowledge gap exists regarding some of the rarer side-effects associated with CAR-T."},{"id":40021,"link":"https:\/\/lymphomacoalition.org\/patient-reported-experience-with-fatigue-a-cross-sectional-study-examining-indolent-and-aggressive-lymphomas\/","name":"patient-reported-experience-with-fatigue-a-cross-sectional-study-examining-indolent-and-aggressive-lymphomas","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Patient-Reported-Fatigue-in-Indolent-vs.-Aggressive-Lymphomas.png","alt":""},"title":"Patient Reported Fatigue in Indolent vs. Aggressive Lymphomas","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 13, 2022","dateGMT":"2022-12-13 17:45:00","modifiedDate":"2025-10-14 15:06:25","modifiedDateGMT":"2025-10-14 15:06:25","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/fatigue\/\" rel=\"category tag\">Fatigue<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":37},"status":"publish","excerpt":"Presented at the American Society of Hematology (ASH) symposium in New Orleans December 10-13 2022. Cancer-related fatigue (CRF) is a persistent, subjective sense of physical, emotional, or cognitive tiredness related to cancer or cancer treatment, which negatively impacts functioning and quality of life (NCCN, 2015). The severity of CRF varies by lymphoma subtype, stage, and treatment received.\n\nLittle information is known about patients\u2019 experience with fatigue based on the rate of disease progression (indolent or aggressive lymphomas). This study aims to provide insights into the fatigue experience of patients with indolent lymphomas compared to those with aggressive lymphomas, using the Lymphoma Coalition (LC) 2022 Global Patient Survey (GPS) on Lymphomas and CLL."},{"id":40027,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/hodgkinlymphoma\/\" rel=\"category tag\">Hodgkin Lymphoma<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/survivorship\/\" rel=\"category tag\">Survivorship<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/hodgkinlymphoma\/\" rel=\"category tag\">Hodgkin Lymphoma<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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":40048,"link":"https:\/\/lymphomacoalition.org\/a-comparative-study-of-unmet-information-needs-of-patients-with-lymphoma-and-cll-north-america-and-europe\/","name":"a-comparative-study-of-unmet-information-needs-of-patients-with-lymphoma-and-cll-north-america-and-europe","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/A-comparative-study-of-unmet-information-needs-of-patients-with-lymphoma-and-CLL-North-America-and-Europe.jpg","alt":""},"title":"Unmet Information Needs of Patients with Lymphoma and CLL: North America and Europe","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Jun 7, 2022","dateGMT":"2022-06-07 18:23:00","modifiedDate":"2025-10-14 15:07:05","modifiedDateGMT":"2025-10-14 15:07:05","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":1,"sec":46},"status":"publish","excerpt":"Submitted for the American Society of Clinical Oncology (ASCO) 2022 Annual Meeting, 3-7 June 2022 in Chicago. Informed patients are consistently associated with better outcomes and overall patient experiences. However, there are still unknowns about the information needs of patients. This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the differences in the unmet information needs among patients with lymphoma and CLL in North America and Europe."},{"id":40043,"link":"https:\/\/lymphomacoalition.org\/impact-of-national-health-expenditure-on-lymphoma-and-cll-diagnosis-in-europe\/","name":"impact-of-national-health-expenditure-on-lymphoma-and-cll-diagnosis-in-europe","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/comparitive-study-oni-health-expenditure-abstract-image.png","alt":""},"title":"Impact of National Health Expenditure on Lymphoma and CLL Support in Europe","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Feb 11, 2022","dateGMT":"2022-02-11 18:18:00","modifiedDate":"2025-10-14 15:07:26","modifiedDateGMT":"2025-10-14 15:07:26","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/barrierstotreatment\/\" rel=\"category tag\">Barriers to Treatment<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":13},"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. Lymphomas are a mixed group of cancers with a wide variety of clinical presentations, ranging from an indolent course to an aggressive disease. They are often challenging to diagnose. A long time to diagnosis of lymphoma or CLL can increase patient anxiety and negatively impact survival and quality of life.\n\nCommunication with healthcare professionals is also a key part of the patient experience at diagnosis, as patients rely on this information to make sense of their condition and care."},{"id":40034,"link":"https:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/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:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/psychosocial\/\" rel=\"category tag\">Psychosocial<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/subtype-specific\/relapserefractory\/\" rel=\"category tag\">Relapse\/Refractory<\/a> <a href=\"https:\/\/lymphomacoalition.org\/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."},{"id":40059,"link":"https:\/\/lymphomacoalition.org\/patient-experience-and-doctor-communication-in-lymphoma-and-cll-clinical-trials-vs-non-clinical-trials\/","name":"patient-experience-and-doctor-communication-in-lymphoma-and-cll-clinical-trials-vs-non-clinical-trials","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/A-comparative-analysis-of-patient-experience-and-patient-doctor-communication-in-patients-with-lymphoma-and-CLL-Clinical-trials-versus-non-Clinical-trials.png","alt":""},"title":"Patient Experience and Doctor Communication in Lymphoma and CLL: Clinical Trials vs. non-Clinical Trials","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 12, 2021","dateGMT":"2021-12-12 18:32:00","modifiedDate":"2025-10-14 15:07:54","modifiedDateGMT":"2025-10-14 15:07:54","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/clinicaltrials\/\" rel=\"category tag\">Clinical Trials<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/\" rel=\"category tag\">Communication & Decision-Making<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/doctor-patientcommunication\/\" rel=\"category tag\">Doctor\u2013Patient Communication<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/shareddecision-making\/\" rel=\"category tag\">Shared Decision-Making<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/clinicaltrials\/\" rel=\"category tag\">Clinical Trials<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/\" rel=\"category tag\">Communication & Decision-Making<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/doctor-patientcommunication\/\" rel=\"category tag\">Doctor\u2013Patient Communication<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/commdecision-making\/shareddecision-making\/\" rel=\"category tag\">Shared Decision-Making<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":5,"sec":4},"status":"publish","excerpt":"Presented at the 63d American Society of Hematology (ASH) conference on 12 December. Clinical trials are essential in ensuring that new treatments are safe and effective and are also a way to improve standards of care. Patients enrolled in clinical trials receive optimal clinical care due to the close management included in trial design.\n\nUsing the 2020 Lymphoma Coalition (LC) Global Patient Survey (GPS) on lymphomas and CLL, this study aims to provide insight into the experience of patients with lymphoma and CLL who have participated in a clinical trial compared to those who have not."},{"id":40053,"link":"https:\/\/lymphomacoalition.org\/age-related-differences-in-the-informational-experiences-and-needs-of-patients-with-lymphoma-results-from-the-2020-global-patient-survey\/","name":"age-related-differences-in-the-informational-experiences-and-needs-of-patients-with-lymphoma-results-from-the-2020-global-patient-survey","thumbnail":{"url":"https:\/\/lymphomacoalition.org\/wp-content\/uploads\/Age-Related-Differences-in-the-Informational-Experiences-and-Needs-of-Patients-with-Lymphoma-Results-from-the-2020-Lymphoma-Coalition-Global-Patient-Survey.png","alt":""},"title":"Age-Related Differences in Information Needs of Patients with Lymphoma: Results from the 2020 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphomacoalition.org\/author\/firstname lastname\/"},"date":"Dec 11, 2021","dateGMT":"2021-12-11 18:26:00","modifiedDate":"2025-10-14 15:08:06","modifiedDateGMT":"2025-10-14 15:08:06","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a>, <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>","space":"<a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/\" rel=\"category tag\">Access to Care<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/accesstocare\/age\/\" rel=\"category tag\">Age<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/healthliteracy\/\" rel=\"category tag\">Health Literacy<\/a> <a href=\"https:\/\/lymphomacoalition.org\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":44},"status":"publish","excerpt":"Presented at the 63rd American Society of Hematology (ASH) conference on 11 December. Lymphomas most commonly occur in older adults but can occur in all age groups. Despite the shift towards patient-centered care, very little has been done to explore the informational needs of patients with lymphoma by age.\n\nIn this study, the Lymphoma Coalition (LC) describes age-related differences in the informational needs of patients with lymphoma using the 2020 LC Global Patient Survey (GPS)."}]