PATIENTS' PERSPECTIVES, EXPERIENCES, AND CONCERNS WITH CROHN'S PERIANAL FISTULAE: INSIGHTS FROM SOCIAL MEDIA PLATFORMS

Crohn’s perianal fistulae (CPF) impact the physical, emotional, and social wellbeing of patients. Despite high biopsychosocial burden CPF, limited data exist regarding how patients navigate challenges associated with this complication CD they perceive treatments. Social media offers a rich opportunity to gain an in-depth understanding CPF on patients’ daily lives outside controlled environments. In study, we used examine experiences concerns assess its their behavior overall wellbeing. We mixed-method approach 119,986 publicly available posts related from 10 US forums between 1/1/10-1/1/20. randomly selected 700 for qualitative analysis using inductive thematic approach. A latent Dirichlet allocation probabilistic topic model was applied explore themes in unsupervised manner within collection posts. Fifty topics were generated manually reviewed identify themes, which compared identified analysis. distinguished 4 main several subthemes that also 38% posts, seek peer-support information about symptoms, treatments, diet, experimental therapies, natural remedies, apprehension Moreover, 30% focused discussions surrounding CPF. Patients reported pain constant discomfort, psychological effects including stress distress, fear, as well work intimate relationships. 21% users discussed treatments financial challenges, unsuccessful procedures/treatments, recurrence post-treatment, lack Lastly, 15% involved medications surgeries such efficacy side experienced complications. While quantitative revealed additional subtheme local topical care, undergo (Figure 1). reveals dynamic range governing perspectives The use mixed-methods complementary insights need different encountered treatment difficulty among management options. These results highlight gap patient educational needs