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ASCO 2022: How Informed Are Patients With CLL in North America and the European Union?

By: Justine Landin, PhD
Posted: Tuesday, June 21, 2022

North American and European patients with lymphoma and chronic lymphocytic leukemia (CLL) may not be receiving adequate clinical information, according to results from the Lymphoma Coalition 2020 Global Patient Survey on Lymphomas and CLL. Across all regions, there was a dearth of information concerning treatment options, treatment side effects, and meaning of diagnosis, and these deficiencies appeared to be more prominent in North America. These findings were presented by Olufunmilayo Bamigbola, MD, of the Lymphoma Coalition, Ontario, during the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting (Abstract 12135).

“Regardless of region, patients with lymphoma need more information about certain areas of their care than is currently provided. Lymphoma Coalition advocates for increased access to appropriate and adequate medical information for patients, and that this information be contextualized to the patient’s needs,” stated the investigators.

A total of 9,179 patients were surveyed across 90 countries grouped into North American (n = 1,543) and European (n = 4,343) regions. The survey included questions concerning the following areas of informational needs: diagnosis and what it means; treatment options; side effects; fertility; and support provided from self-care, family, and counseling. Regional demographics were compared with survey criteria via regression analyses.

Patients in all regions reported that they require more information concerning treatment options, diagnosis and what it means, and side effects of treatment. North American patients were significantly more likely to express a need for treatment options (61%) and self-care support (17%) compared with European patients (50% and 14%, respectively). However, North American patients tended to be less likely to require more information concerning diagnosis. There were no regional differences in survey reports concerning treatment side effects, fertility, family support, and counseling support.

Disclosure: For full disclosures of the study authors, visit coi.asco.org.


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