Quality assessment of information on chimeric antigen receptor T-cell therapy on YouTube: An analysis.
Authors: Chahal Rutvi , Garg Tulika , Khosla Atulya Aman , Singh Rohit , Karass Susan Hosny , Sharma Rakesh Kumar , Thakkar Astha , Jatwani Karan 
Published: June 2023

e13633 Background: YouTube is an open-access source of information with more than 2.5 billion users. It plays an important role in disseminating information especially related to health, including cancer. Chimeric antigen receptor-T (CAR-T) cell therapy has significantly improved outcomes for hematologic malignancies over recent years. We aim to assess the quality and engagement parameters of the 100 most viewed videos on YouTube on CAR-T cell therapy. Methods: A systematic search was conducted on YouTube using the search terms (“CAR-T Cell therapy” AND “Cancer”). One hundred most viewed videos in English were selected. We utilized the already validated tools PEMAT1 and DISCERN2 to assess the quality of these videos on CAR-T. Additionally, we looked at the number of views, comments, and likes. Descriptive statistics and Pearson correlation tests were performed using R studio v2022.12.0-353. Results: The videos in our study had up to 3.4 million views (median number of views:19,901), and the overall quality of information was fair (50%) by the DISCERN score. These videos were categorized into different sources academic (60%), media (22%), and industry (18%). The mean DISCERN score (44.27± 10.8), mean PEMAT actionability (47% ± 38%), mean PEMAT understandability (75.6% ± 15.5%). While benefits were mentioned by 67%, only 29% discussed the risks of CAR-T Cell therapy; 37% of videos promoted shared decision-making, and only 10% summarized the information at the end as per the DISCERN criteria. There was no significant correlation between DISCERN and PEMAT scores with video engagement parameters, including likes, views, and comments. Furthermore, only 30% of videos discussed other treatment options except for CAR-T. While 88% of videos used everyday language, medical terminologies were defined by 73% of videos; 32 % of videos were broken into short sections with informative headers as per the PEMAT criteria. Conclusions: To the best of our knowledge, this is the first study evaluating the quality of information on CAR-T cell therapy on YouTube. In comparison to previous studies using YouTube 3,4, this study shows the quality of the information provided in these videos is valid and reliable. They also prove to be actionable and understandable; these videos focus on the benefits of CAR-T cell therapy and are less likely to discuss risks or shared decision-making. We believe YouTube videos on CAR-T Cell therapy may serve as a supplementary source of providing information to patients wishing to learn more on this topic. 1) Shoemaker SJ et al. The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide. 2) Charnock D et al. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. 3) Steinberg et al. YouTube as Source of Prostate Cancer Information, Urology. 4) Di Bello et al. Immunotherapy for Urological Tumors on YouTube: An Information-Quality Analysis, Vaccines.