Abstract Background The combination of the increasing use of social media by young people, and their nature as a means of communication that allows for unrestricted self-expression, renders them a key forum for information exchange, including health-related topics. Inflammatory bowel disease (IBD), particularly since it is affecting younger cohorts, has previously been central to studies on social media usage. This systematic review aims to summarise previously employed methodologies in social media studies and synthesize available information on social media usage patterns by IBD patients. Methods This systematic review was registered on PROSPERO (CRD420251006915) and reported according to PRISMA guidelines. Studies were included if they were reporting on the usage of social media by IBD patients or if they were examining social media content created by IBD patients, and written in English. Results Initial search returned 941 studies, and after title, abstract and full-text screening, 32 studies were included for data extraction. Studies were grouped according to their methodological design, into content-based analyses (21) and survey-based studies reporting on usage trends (11). Three subtypes of content analysis were encountered: thematic analysis, quality analysis and sentiment analysis. Within platform-specific studies, Youtube was the most frequently examined, with a recent increase in TikTok-focused studies. The most commonly reported reasons to use social media were information seeking and connecting with the wider community, for peer-to-peer support. Main domains of interest in information seeking included details of daily living with IBD (expressed through sharing of lived experiences), information on medical and surgical treatment options, and diet. Conclusion This systematic review summarises the available evidence on both methodologies and key trends in social media–based research within IBD populations. It highlights the growing interest in this area, reflecting a wider recognition that social media represents an important channel of communication and support for people living with IBD. Healthcare professionals should remain attuned to contemporary modes of communication and aware of the insights such platforms can offer into patients’ experiences and needs. Conflict of interest: Mr. Argyriou, Orestis: No conflict of interest Petmeza, Christina Anna: No conflict of interest Goyal, Chirag: No conflict of interest Ghersin, Itai: No conflict of interest Worley, Guy: No conflict of interest Tozer, Philip: Personal Fees: Takeda - speakers fees, member of Inspire, and advisory boards Ferring - speakers fees Falk - speakers fees Tillott’s - speakers fees J & J - speakers fees Abbvie - speakers fees Hart, Ailsa: Grant: Takeda Personal Fees: Abbvie, Amgen, Arena, AZ, Falk, Celltrion, Eli Lilly, Ferring, Genentech/ Roche, GSK, Pfizer, Takeda, Napp, Pharmacosmos, Janssen (J & J), Bristol-Myers Squibb, Gilead, Galapagos, Alfasigma Sahnan, Kapil: Speaker fees from Takeda, JnJ, Intuitive Ad Board with Medtronic
Argyriou et al. (2026) studied this question.