ABSTRACT
Objective: To understand patient experiences with FL disease and treatment through SML. Method: Social media data were extracted between February 2019 and July 2020 using “Follicular Lymphoma” and related keywords via Social Studio®, an online aggregator tool for social media posts. English as well as local language posts were extracted from five countries including United States (US), Canada, United Kingdom (UK), Germany and France. Patient conversations were identified, synthesized, mapped, and analyzed to understand different concerns. Results: 487 patient posts discussing 1324 topics of conversation were identified. In most countries, top discussed topics included patient concerns such as quality of life (QoL) changes, and disease and/or treatment management. Multiple patient concerns (n=554) were observed across all geographies: impact on QoL (198), curability (73), fear of relapse/progression (64), disease/treatment information need (50), lack of emotional support (43), FL transformation to diffuse large B-cell lymphoma (42), and cost of treatment (30) were notable concerns. To assess QoL impact, patient conversations (198) were mapped to the statements in the Functional Assessment of Cancer Therapy – Lymphoma questionnaire (FACT-Lym). Pain and lack of energy (57), swollen nodes/lumps (47), and side effects of treatment (31) had impacted physical wellbeing, while support from family/friends (41) helped patients cope emotionally. A few patients (18) said that they were able to return to work after treatment. As for inter-country differences, conversations were mostly from the US (43%) and UK (20%);male patients in Germany were more active social media participants than female patients, which was different from other four countries;only patients in the UK had expressed concerns about COVID-19 impact. Conclusion: Insights from international SML research indicated concerns related to disease- and/or treatment-related impact on QoL and interest about potential cure for the disease.