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":39987,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/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\/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":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:\/\/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."},{"id":40048,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/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\/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":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":40053,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/lymphoma-stg.clarovantdigital.com\/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:\/\/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\/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\/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\/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":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)."}]