Dataset Information

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

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.

SUBMITTER: Khalil C

PROVIDER: S-EPMC10693318 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

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Publications

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

Khalil Carine C van Deen Welmoed K WK Dupuy Taylor T Syal Gaurav G Arnold Corey C Cazzetta Susan E SE Nazarey Pradeep P PP Almario Christopher V CV Spiegel Brennan M R BMR

Crohn's & colitis 360 20231001 4

<h4>Background</h4>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 ...[more]

PMID: 38046445

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Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

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