Social Media as a Source of Information on Interstitial Cystitis/Bladder Pain Syndrome: Support Tool or Misinformation?

PURPOSE: The aim of this study was to evaluate which social media platforms are most frequently used by women with interstitial cystitis/bladder pain syndrome and to assess the scientific reliability of the information shared online. MATERIALS AND METHODS: A cross-sectional analysis was conducted on publicly available posts published on Instagram, Facebook, X, YouTube, and TikTok. Only posts containing informative content were included. Spam, duplicated posts, and advertisements were excluded. Two expert urogynecologists independently assessed the scientific accuracy of each post, classifying them as containing scientific evidence, containing scientifically correct but alarming information, or lacking scientific evidence. For each post, authorship type, thematic category, and user engagement were recorded. Inter-rater reliability was calculated using the Kappa statistic. RESULTS: One hundred and forty-six posts were included: 59 on Instagram, 72 on Facebook, 9 on YouTube, 4 on X, and 2 on TikTok. Most Instagram posts were published by healthcare professionals, while Facebook posts were predominantly published by patients. On Instagram, the most frequent topic was awareness, whereas diagnostic and therapeutic discussions were more common on Facebook. A minority of posts contained scientifically validated information. Instagram generated the highest user engagement. Agreement between reviewers was low for patient-generated content but higher for posts focused on diagnosis and treatment. CONCLUSIONS: Instagram is mainly used by healthcare professionals to raise awareness, whereas Facebook functions as a patient-driven space for discussion. The majority of posts lacked scientific accuracy, underscoring the need for healthcare professionals to strengthen their online presence to counter misinformation and support individuals seeking reliable information about bladder pain.