OBJECTIVES: To identify patient relevant outcomes and unmet needs in DLBCL through social media listening.

METHODS: Social media data collected from Forums, Twitter, Facebook, News and Blogs between February 2018 and July 2019 using the Social Studio^® tool. Search was limited to open data sources and English language only. Iterative random sampling was used to draw social media records relevant to the research objective. A detailed analysis was conducted to identify unmet needs related to treatment and quality of life (QoL) among DLBCL patients.

RESULTS: Final data set consisted 1,500 posts. Among these, posts by patients and caregivers were 230, majority of which were from the US (48%) and the UK (33%). Most discussed symptom was pain (36%, n=69), followed by enlarged lymph nodes (26%), B symptoms (25%), and fatigue (13%). Delay in diagnosis was a concern that may be attributed to lack of disease awareness among patients, symptomatic treatment, and lag in referral to specialists. Patient discussions were mostly neutral in nature and focused primarily on chemotherapy regimens. A majority (20.3%; n=59) mention treatment switches to stem cell transplant (SCT) after experiencing multiple relapses and failures from chemotherapy. Switching between chemotherapy regimens (10%; n=59) was found to be due to intolerability, refractory disease, or relapse. Lack of treatment options for transplant ineligible patients was identified as a key unmet need in DLBCL space. Cancer diagnosis, treatment inefficacy, and long-term side effects substantially affected physical (33.6%; n=104) and emotional QoL (32.6%; n=104) in patients.

CONCLUSIONS: Physical and emotional impact of pain underline the patient experience in DLBCL from diagnosis through treatment and recovery. Delayed diagnosis, side effects, and fear of relapse are key areas of concern for patients and caregivers. Inadequate treatment options for relapsed DLBCL patients, especially those ineligible for SCT, indicate the need for new treatments.