P3B410: #pediatricchronicdisease on Tiktok: Portrayal of Health Information Related to Congenital Conditions, Pediatric Chronic Diseases, and Neurodevelopmental Disorders on a Video Based Social Media Mobile Application

Background: Social media platforms are increasingly being used to disseminate health information as well as distribute personal portrayals of various medical conditions. TikTok, a video-sharing mobile application, is one of the most downloaded applications, yet little is known about user-generated content related to pediatric chronic diseases (PCD) and neurodevelopmental disorders (IDD) on the platform. The primary aim of this study was to quantitatively and qualitatively evaluate the diversity of content and information quality of videos related to common PCD and IDD conditions on TikTok. Additionally, insight regarding semantic, thematic, and sentiment aspects of creators associated tagged information and community contributions to videos was investigated.

Methods: The top 100 most popular videos uploaded by TikTok video creators for 45 unique genetic, PCD, and IDD conditions across 16 specialty areas were rated by two independent reviewers and classified as misleading, useful, and/or personal experience. Descriptive and quantitative characteristics of the videos were obtained. The Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V) and Global Quality Score (GQS) were used to assess the overall quality, understandability, and actionability of the videos. Semantic and sentiment analysis was completed with the aid of Gelphi and Python.

Results: Of the 4500 videos evaluated, a majority of videos were personal experience (68%) with many being marked useful. Videos on the platform were highly understandable by viewers but had low actionability. Healthcare providers uploaded higher PEMAT-A/V quality videos compared to non-healthcare providers (p < 0.001). Few videos in the study were posted by organizations (6%). Common themes include “day in my life”, behavioral issues, accommodations / adaptations, therapeutics, and advocacy. Generally creator sentiment was positive or neutral (63%) but community comments had more variability based on the condition. Topics of “hidden” vs “visible” disability and use of popular trends and sound tracks were more evident in adolescent compared to parental posted content (p < 0.05).

Conclusion: TikTok provides a unique opportunity to connect and learn from communities affected by pediatric chronic disease and neurodevelopmental disability through both personal and professional content creation, with unique insight into the daily personal struggles associated with pediatric health conditions today. Healthcare institutions should consider mechanisms to surveil public social media content to monitor population concerns in addition to traditional community needs assessments. Professionals and organizations should consider the development of targeted and accurate health information content for the Pediatric community on social media platforms.