Endometriosis Communities on Reddit: Quantitative Analysis

Endometriosis is a chronic condition that affects 10% of the people with a uterus. Due to the complex social and psychological impacts caused by this condition, people with endometriosis often turn to online health communities (OHCs) for support.

Prior work identifies a lack of large-scale analyses of the experiences of patients with endometriosis and of OHCs. This study aims to fill this gap by investigating aspects of the condition and aggregate user needs that emerge from 2 endometriosis OHCs, r/Endo and r/endometriosis.

We used latent Dirichlet allocation topic modeling, an unsupervised machine learning method, to extract the subject matter ("topic") of >30,000 posts and >300,000 comments. In addition to latent Dirichlet allocation, we leveraged supervised classification. Specifically, we fine-tuned a series of the DistilBERT models to identify the people and relationships (personas) a post mentions as well as the type of support that the post seeks (intent). Combining the results of these 2 methods, we identified associations between a post's topic, the personas mentioned, and the post's intent.

The most discussed topics in posts were medical stories, medical appointments, sharing symptoms, menstruation, and empathy. Through the combination of the results from topic modeling and supervised classification, we found that when discussing medical appointments, users were more likely to mention the endometriosis OHCs than medical professionals. Medical professional was the least likely of any persona to be associated with empathy. Posts that mentioned partner or family were likely to discuss topics from the life issues category, particularly fertility. Users sought experiential knowledge regarding treatments and health care processes, and they also wished to vent and establish emotional connections about the life-altering aspects of the condition.

We conclude that members of the OHCs need greater empathy within clinical settings, easier access to appointments, more information on care pathways, and more support for their loved ones. Endometriosis OHCs currently fulfill some of these needs as they provide members with a space where they can receive validation, discuss care pathways, and learn to manage symptoms. This study demonstrates the value of quantitative analyses of OHCs. Computational analyses can support and extend findings from small-scale studies about patient experiences and provide insights into hard-to-reach groups. Finally, we provide recommendations for clinical practice and medical training programs.