Social Media Provides Insights on Impact of Fistulizing CD Advances

Although practitioners know that perianal fistulizing Crohn disease places high burdens on patients across virtually all domains of health, few data have been available about how patients perceive their treatment for this complication and how they manage the challenges it presents in their lives.

In a paper presented at the Crohn’s & Colitis Congress 2022, investigators from Cedars-Sinai Medical Center in Los Angeles reported on their research into social media posts by Crohn disease patients with fistulizing disease, which shed new light on patients’ experiences and concerns.

The researchers examined 119,986 publicly available posts related to fistulizing Crohn disease from 10 US forums, posted between January 1, 2010, and January 1, 2020. Using a mixed-method approach, the team selected 700 posts at random and conducted qualitative analysis using an inductive thematic approach to identify themes.

The researchers identified 4 main themes and several subthemes in their qualitative thematic analysis. In 38% of the posts, they reported, “patients used social media to seek peer-support and information about CPF [Crohn perianal fistulae] symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments.”

In 30% of the posts, the discussion focused on the physical and psychosocial burdens of fistulizing disease, including pain and constant discomfort, stress symptoms, distress, and fear, and on the impact of this disease on their work lives and intimate relationships. Patients in 21% of posts discussed challenges associated with treatment for fistulizing Crohn disease, including costs, unsuccessful procedures and treatments, recurrence of disease following treatment, and lack of information on treatments.

The investigators also found that 15% of the posts referenced patient experiences with medications and surgeries, including the efficacy of treatments, side effects experienced, and complications. The quantitative analysis revealed additional subthemes related to financial challenges and local and topical care, and patients’ apprehension about undergoing treatments.

Overall, the researchers concluded that their social media analysis revealed a dynamic range of themes among patients in regard to their perspectives and experiences with perianal fistulizing Crohn disease, and in particular, highlighted a gap in patient education on this serious complication.

REFERENCE

Khalil C, van Deen W, Dupuy T, et al. Patients’ perspectives, experiences, and concerns with Crohn’s perianal fistulae: insights from social media platforms. Inflamm Bowel Dis. 2022;28(1):S92–S93 https://doi.org/10.1093/ibd/izac015.149