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A Syngeneic Murine Model of Endometriosis using Naturally Cycling Mice

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Published on: November 24, 2020

Endometriosis Communities on Reddit: Quantitative Analysis.

Federica Bologna¹, Rosamond Thalken¹, Kristen Pepin²

¹Department of Information Science, Cornell University, Ithaca, NY, United States.

Journal of Medical Internet Research

|March 31, 2025

Summary

This summary is machine-generated.

People with endometriosis seek empathy and better access to care in online health communities (OHCs). These OHCs provide support, but patients desire more validation and information from healthcare professionals.

Keywords:

chronic disease community networks consumer health information information science internet online health communities patient-centered care self-help groups social support

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Area of Science:

Computational social science
Medical informatics
Online health communities research

Background:

Endometriosis affects 10% of people with a uterus, causing significant social and psychological distress.
Online health communities (OHCs) are crucial support systems for individuals managing endometriosis.
Limited large-scale analyses exist on patient experiences within endometriosis OHCs.

Purpose of the Study:

To analyze user needs and experiences in two endometriosis OHCs (r/Endo and r/endometriosis).
To identify key topics, user-expressed needs, and support-seeking behaviors within these communities.
To bridge the gap in large-scale quantitative research on endometriosis patient experiences.

Main Methods:

Latent Dirichlet allocation (LDA) topic modeling on over 30,000 posts and 300,000 comments.
Supervised classification using fine-tuned DistilBERT models to identify personas and user intent.
Combined topic modeling and classification to analyze associations between post topics, mentioned personas, and intent.

Main Results:

Top topics include medical stories, appointments, symptoms, menstruation, and empathy.
Users mentioned OHCs more than medical professionals when discussing appointments.
Posts discussing family/partners focused on fertility; users sought experiential knowledge and emotional connection.

Conclusions:

Endometriosis OHC members require more empathy, accessible appointments, and clearer care pathways.
OHCs offer validation, symptom management, and care pathway discussions.
Quantitative analysis of OHCs provides valuable insights for clinical practice and medical training.