Patients’ Perspectives, Experiences, and Concerns With Perianal Fistulae: Insights From Online Targeted-Disease Forums

• Published in: Crohn's & colitis 360 2023-10, Vol.5 (4), p.otad073-otad073
• Main Authors: Khalil, Carine, van Deen, Welmoed K, Dupuy, Taylor, Syal, Gaurav, Arnold, Corey, Cazzetta, Susan E, Nazarey, Pradeep P, Almario, Christopher V, Spiegel, Brennan M R
• Format: Article
• Language: English
• Subjects: Observations and Research
• ISSN: 2631-827X; 2631-827X
• DOI: 10.1093/crocol/otad073

Abstract Background Perianal fistulae can undermine physical, emotional, and social well-being in patients with Crohn’s disease and are challenging to manage. Social media offers a rich opportunity to gain an in-depth understanding of the impact of perianal fistulae on patients’ daily lives outside of controlled environments. In this study, we conducted social media analytics to examine patients’ experiences with perianal fistulae and assessed the impact of perianal fistulae on patients’ behavior and overall well-being. Methods We used a mixed-method approach to examine 119 986 publicly available posts collected from 10 Crohn’s disease forums in the United States between January 01, 2010 and January 01, 2020. Discussions related to Crohn’s perianal fistulae were retrieved. We randomly selected 700 posts and qualitatively analyzed them using an inductive thematic approach. We then applied a latent Dirichlet allocation probabilistic topic model to explore themes in an unsupervised manner on the collection of 119 986 posts. Results In the qualitative analysis, 5 major themes were identified: (1) burden of perianal fistula; (2) challenges associated with treatment; (3) online information seeking and sharing; (4) patient experiences with treatments; and (5) patients’ apprehension about treatments. In the quantitative analysis, the percentages of posts related to the major themes were (1) 20%, (2) 29%, (3) 66%, and (4) 28%, while the topic model did not identify theme 5. Conclusions Social media reveals a dynamic range of themes governing patients’ perspectives and experiences with Crohn’s perianal fistulae. In addition to the biopsychosocial burden, patients frequently express dissatisfaction with current treatments and often struggle to navigate among available management options. Lay Summary Despite the biopsychosocial burden of CPF, little is known about how patients navigate the challenges associated with this condition. Hence, we collected related posts from the internet and analyzed them to understand patients’ needs, challenges, and experiences with this condition.