Patients' Perspectives, Experiences, and Concerns With Perianal Fistulae: Insights From Online Targeted-Disease Forums.
Crohn’s disease
netnography
patient perspectives
perianal fistula
social media
Journal
Crohn's & colitis 360
ISSN: 2631-827X
Titre abrégé: Crohns Colitis 360
Pays: England
ID NLM: 101752188
Informations de publication
Date de publication:
Oct 2023
Oct 2023
Historique:
received:
01
08
2023
medline:
4
12
2023
pubmed:
4
12
2023
entrez:
4
12
2023
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
Background
UNASSIGNED
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
UNASSIGNED
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
UNASSIGNED
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
UNASSIGNED
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.
Identifiants
pubmed: 38046445
doi: 10.1093/crocol/otad073
pii: otad073
pmc: PMC10693318
doi:
Types de publication
Journal Article
Langues
eng
Pagination
otad073Informations de copyright
© The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.
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