Most-viewed TikTok videos on inflammatory bowel disease show low quality

(Press-News.org) June 4, 2025 — The most popular TikTok videos related to inflammatory bowel disease (IBD) have millions of views – but very low scores for quality of medical information, reports a study in the May/June issue of Gastroenterology Nursing, Official Journal of the Society of Gastroenterology Nurses and Associates. The journal is published in the Lippincott portfolio by Wolters Kluwer.

"Social media platforms such as TikTok have the potential to reach a wide audience of people living with IBD, particularly young adults," comments lead author Samantha Winders, PhD, RN, University of Washington School of Nursing, Seattle. "Our study finds problems with the quality of medical information provided by the most-viewed videos – suggesting opportunities for healthcare providers to create accurate content targeting gaps in IBD education."

TikTok has potential for reaching young adults with IBD

Ulcerative colitis and Crohn’s disease are chronic autoimmune diseases with a major impact on health and quality of life. Peak age at IBD onset is 15 to 29 years – corresponding to the peak age for social media use.

Social media platforms have become an important means for sharing health information, with the potential to rapidly share information to diverse audiences. The video-sharing platform TikTok is particularly popular among young adults –of more than 1 billion TikTok users worldwide, most are between age 18 and 34 years. Dr. Winders and colleagues designed a study to explore the quality and themes addressed by TikTok videos providing IBD content.

By searching relevant hashtags (#ibd, #crohns, and #colitis), the researchers identified the most-viewed English-language videos on IBD. The characteristics, quality, and content were analyzed for 86 videos with a total of 235 million views, posted by 41 unique users. All of the videos were posted by individuals with IBD; none were posted by healthcare providers.

Opportunities to provide 'tailored educational content' for TikTok users with IBD

Despite their popularity, the quality of content provided by the IBD videos was poor. On one validated measure (the Global Quality Scale), the average quality score was just two on a five-point scale. "Most videos were lacking information and reliable sources," the researchers write. That was consistent with previous studies of social media content on other medical conditions.

On thematic analysis, nearly 70% of the top IBD TikTok videos addressed the topic of ostomies. Subthemes included information about ostomies, such as the steps for changing an ostomy bag and cleaning the stoma. Other videos were targeted at "normalizing ostomy" – sometimes using music and humor to counter negative perceptions.

Advocacy was the second most common theme (37% of videos), with key subthemes including raising awareness of IBD and the "invisible disability" associated with it. This was followed by aspects of disease management (32%), including medications, surgery, and diet. Other main themes included symptom management, interactions with the healthcare system, IBD symptoms, and social relationships.

TikTok may provide "a safe space where those with IBD can share information about their invisible disease and spread awareness," the researchers write. The identified themes and subthemes "may indicate a need for IBD-specific education regarding ostomies, advocacy, and disease management."

However, the quality of the IBD-related TikTok videos appears very low, raising concerns about the potential for misinformation. Emphasizing that none of the top videos in their study were created by healthcare providers, Dr. Winders and coauthors conclude: “TikTok provides an opportunity for HCPs to engage with those with IBD, bring IBD awareness, and provide tailored educational content to users on the platform."

Read Article: IBD on TikTok: Utilizing the Platform for Information on Ostomies, Advocacy, and Disease Management

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