Social Media Posts Shows Burden of Crohn’s Perianal Fistulae


The biggest theme identified was patients seeking peer-support and information about CPF symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments.

Carine Khalil, PhD

Carine Khalil, PhD

Patient’s with Crohn’s perianal fistulae (CPF) has an increased burden of quality of life and financial concerns over treatments.

However, it can be difficult for researchers and clinicians to understand this true burden, but social media can offer a truer glimpse at what is occurring.

A team, led by Carine Khalil, PhD, Cedars Sinai Medical Center, used social media to examine how patients with Crohn’s perianal fistulae rate their experience and express concerns to assess its impact on behavior and wellbeing in data presented during the Crohn’s and Colitis Congress 2022 Annual Meeting.

The Disease

Crohn’s perianal fistulae can affect the physical, emotional, and social wellbeing of patients, reducing their overall quality of life. However, there is not much data available from studies on how patients navigate the challenges tied to the complications of Crohn’s disease and how the individual perceives the value of treatments.

One way to tap into this patient resource is by searching social media, which can aid in gaining an in-depth understanding on the impact of the disease on the daily lives of patients.

In the study, the investigators used a mixed-method approach to analyze 119,986 publicly available posts related to the disorder from 10 Crohn’s disease forums between 2010-2020. They then randomly selected 700 posts to analyze with an inductive thematic approach.

The team applied a latent Dirichlet allocation probabilistic topic model to explore themes in an unsupervised manner within the collection of posts and generated 50 topics.

Each topic was manually reviewed to identify themes that were then compared to the themes identified in the qualitative data analysis.


Overall, 4 main themes and several subthemes emerged.

For example, 38% of posts involved patients seeking peer-support and information about CPF symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments.

In addition, 30% of the posts focused on the biopsychosocial burden of the disease, while patients reported pain and constant discomfort, psychological effects, including stress symptoms, distress, and fear. This also included the social impact on work and intimate relationships.

Another theme was users discussing treatment challenges, which was seen in 21% of posts. This included financial challenges, unsuccessful procedures and treatments, recurrence of CPF post-treatment, and a lack of information of treatments.

The final theme, found in 15% of posts, involved patient experience with medications and surgeries, including efficacy of treatments, side effects, and complications.

The investigators also identified additional subthemes related to financial challenges and local and topical care in the quantitative analysis and subthemes related to apprehension to undergo treatments in the qualitative analysis.

“Social media analysis reveals a dynamic range of themes governing patients’ perspectives and experiences with CPF,” the authors wrote. “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.”


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