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

Abstract

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