To evaluate the most used social media (SoMe) by women with Painful Bladder Syndrome (PBS)/ Interstitial Cystitis (IC)and their impact on the exchange of information.

A cross-sectional study was conducted on SoMe, collecting posts from the most used platforms in Italy: Instagram, Facebook (Fb), X, YouTube and TikTok (December 2023-December 2024). The research included terms such as "Painful Bladder Syndrome" and "Interstitial Cystitis": each keyword was entered into the search tool of the SoMes, adding only posts that were in Italian and contained informative text (in image or text format). The interactions of the audience with each post were quantified (likes, comments, and shares) and the posts were evaluated by 2 urogynecologists, who categorized them as "has scientific evidence", “scientific evidence scares” and "does not have scientific evidence". The results were analyzed using the Kappa test and the absolute agreement was also calculated.

The 146 publications collected were: 59 (40.4%) on Instagram, 72 (49.3%) on Fb, 9 (6.1%) on YouTube, 4 (2.7%) on X, 2 (1.3%) on TikTok. On Instagram 62.7% of authors are healthcare professionals, 20.3% patient’s associations, 11.8% patients, 5.2% pharmaceutical companies. On Fb 59.7% of authors are patients, 22.2% patient’s associations, 14% healthcare professionals, 4.1% pharmaceutical companies. The majority of the authors identified as professionals in both platforms are physiotherapists, psychotherapists, urologists. On Instagram most of the posts are about raising awareness on the disease (54.3%) and diagnosis (10.2%). On Fb most posts are about diagnosis (23.6%) and therapy (16.7%). 49/59 (83.1%) post on Instagram and 60/72 (83.3%) on Fb are posted on “business page”. Only 5/59 (8.5%, Instagram) and 14/72 (19.4%, Fb) have scientific evidence, 4/59 (6.8%, Instagram) and 11/72 (15.3%, Fb) have scientific evidence scares. The mean±SD of likes on Instagram were 126.9±129 and on Fb were 10.8±23.5 (p< 0.00). The most viewed videos are those published on Youtube (views:494.6±742.5). 1/2 video on TikTok have scientific evidence, with both few likes (mean±SD: 21.5±26.4) There was low agreement (Kappa) among posts authored by healthcare professionals and patients alike. Regarding the analysis by professionals, there was a good agreement in publications about diagnosis and therapy of PBS/IC.

SoMe has become increasingly popular in the urology community. Users often turn to SoMe to learn about urological health and share their own experiences, while medical professionals may use it for networking, education, and research purposes. Our results demonstrated that Fb and Instagram are the most used SoMes but despite this, posts with good scientific evidence are a minority.

Healthcare professionals are the majority in publications on Instagram, meanwhile are patients on Fb. In respect to the scenario of each SoMe, we demonstrated that X is used for debates, while Instagram and Fb represent sources of information and promotion of professional image.

Continence 15S (2025) 102037
DOI: 10.1016/j.cont.2025.102037