Unveiling the Digital Landscape of CAR-T Therapies in Multiple Myeloma Using Social Media Insights
Authors: Hansen Doris K. , Liu Yi-Hsuan , Lu Xiaoxiao , Huo Stephen 
Published: December 2023

Introduction: The rapid evolution of novel chimeric antigen receptor T-cell (CAR-T) therapies, including Carvykti (ciltacabtagene autoleucel) and Abecma (idecabtagene vicleucel), have revolutionized the treatment landscape for multiple myeloma (MM) patients. These cutting-edge therapies have demonstrated remarkable efficacy in clinical trials, representing a significant advancement in the field. However, their real-world impact on patient and physician experiences, and perceptions remain important topics of ongoing investigation. In recent years, social media platforms have emerged as valuable sources of real-time data and patient perspectives, providing an unprecedented opportunity for researchers to gain insights into physician and patient perceptions around these emerging CAR-T therapies. This study aims to perform a comprehensive digital analysis to measure sentiment expression by different health care stakeholders and to identify health information needs related to MM CAR-T therapies.
Methods: This digital analysis utilized publicly available data related to CAR-T therapies approved for the treatment of relapsed or refractory MM from various online sources related to CAR-T therapies. The data was captured using the web indexing tool Talkwalker. The analysis covered the time period from May 21, 2021 to May 21, 2023. Quantitative analysis involved applying filters and Boolean search terms to segment the data and generate figures such as share of voice, language and media type distribution, and treatment and MM mentions over time. Additionally, a qualitative assessment was conducted by reviewing posts related to the key topics of interest. Individuals who self-identify as healthcare professionals (HCPs) based on their bio, social media name, byline in news articles, or other indications were included in stakeholder analysis.
Results: Out of the 471.5K MM posts generated over the 2-year study period, 47,909 posts (10%) were about CAR-T therapy, and 13,117 posts specifically commented on either Carvykti (55%) or Abecma (45%). In terms of specialty, hematologists were the primary contributors (47%), followed by oncologists (16%) and pharmacists (6%). CAR-T therapy was most referenced in posts discussing efficacy, safety, duration, and time to cytokine release syndrome (CRS), with a higher number of posts mentioning Carvykti (57%) compared to Abecma (43%). The most prominent key themes of pressing challenges and needs mentioned among CAR-T therapy posts were cost (60.5%), post-CAR-T care (38.6%), access (37.5%), education (6.7%), and quality of life (6.4%). Both Carvykti and Abecma were frequently mentioned alongside access and cost, although access (60%) was more prominent with Carvykti and cost (61%) with Abecma. Among HCPs, the most significant key theme of pressing challenges and needs was post-CAR-T infusion care considerations (58.6%), such as extended hospital stays to manage immune-mediated toxicities such as CRS and neurotoxicity, the risk of cytopenia and infections, and strategies to mitigate these risks. Management strategies mentioned included earlier and more aggressive supportive care, the use of cytokine-targeting therapies such as tocilizumab for any grade CRS, steroids such as dexamethasone for immune effector cell-associated neurotoxicity syndrome, and prophylactic antiseizure medications for all patients regardless of neurotoxicity. In the category of Diversity, Equity, & Inclusion, both Carvykti and Abecma were mentioned similarly on various topics, including access to CAR-T therapies (87% vs. 74%), diversity in clinical trials (19% vs. 17%), geographic location implications (9% vs. 15%), and racial disparities (3% vs. 4%).
Conclusions: The study findings highlight the importance of demystifying cost perceptions against the added value to patients, HCPs and payers, and implementing comprehensive post-CAR-T care protocols aligned with the concerns expressed in social media discussions for improvement in CAR-T therapies for multiple myeloma. By leveraging the power of social media data, this study offers valuable real-world insights that can inform clinical decision-making, enhance patient-centered care, and contribute to the development of strategies to overcome challenges associated with CAR-T therapies in multiple myeloma.