Crohn's disease surgery experiences on TikTok: Analysing patient-generated content

Abstract

Introduction and Aim: TikTok, a widely used social media (SM) platform, creates a unique environment for open self-expression. It serves as a valuable outlet for young Crohn's disease (CD) patients undergoing surgery to voice their experiences and concerns. This study seeks to evaluate patient-created TikTok content to gain deeper insights into their priorities and challenges during post-surgery recovery. Method(s): The most popular combinations and hashtags for each CD procedure were identified, following preliminary searches combining relevant keywords. The first 10 results for each search were analysed. Data collection included video and creator demographics, and thematic analysis of the content was performed. Result(s): A total of 12 searches was performed, combining search terms and hashtags for CD and surgical procedures. 120 videos were retrieved from all searches and a total of 64 videos were analysed, following exclusion of 56 videos. Mean duration was 141 s (6-446), with a mean of 5148 likes (8-181,600) and 161 shares (0-7902). Most of the videos (88%) were categorised as informational/raising awareness, from patient to patient, with further subthemes including immediate and long-term post-operative recovery (20 videos), explaining a surgical procedure (14 videos), explaining the disease and complications (13 videos), living with a stoma/stoma care (9 videos), health benefits and state support (3 videos) and Crohn's perineum in females (3 videos). Conclusion(s): This study is the first to explore key themes shared by patients undergoing surgery for CD on a popular SM platform. It enhances understanding of patient priorities to improve communication and support pre-operative decision-making.