What are Patients with Endometriosis Discussing Online?

High-Quality Information on Endometriosis is Essential, as Highlighted by Online Community Insights.

Key Points

Highlights: 

• Online health communities for endometriosis primarily serve as platforms for individuals to understand the disease's symptoms and exchange medical information.

Importance:

•  There is a pressing need for high-quality information about endometriosis and compassionate care in clinical settings.

What’s done here:

• A team from Cornell University used machine learning to analyze almost 35K of posts and 353K comments responding to posts on online endometriosis communities.

Key results:

• The most common topics of posts were menstruation, symptoms, medical appointments, medical stories, and empathy. 
• Half of the posts were written to seek information about the disease.
• Around a third of posts were written to seek the experience of others.

Lay Summary

People mostly use online health communities about endometriosis to learn about the symptoms of the disease and share their own medical experiences, according to a new study published in the Journal of Minimally Invasive Gynecology. The posts and comments of the users underscore the need for more empathy in the clinic as well as easier access to high-quality information about the disease.

In order to characterize the content of the online community about endometriosis, a team of researchers led by Dr. Matthew Wilkens from the Department of Information Science at Cornell University in Ithaca, New York analyzed 34,715 posts and 353,162 comments responding to posts on endometriosis online health communities using a machine learning approach.

The results showed that the most common topics of posts were menstruation, symptoms, medical appointments, medical stories, and empathy. 

A little less than half (49%) of posts were written to seek information about endometriosis while 29% were written to seek the experiences of others with the disease. Users strongly preferred excision surgery over ablation for the treatment of endometriosis. The  are important 

These findings shed light on the importance of the availability of high-quality information about endometriosis and the for healthcare professionals to be empathetic towards patients in the clinic.

Research Source: https://pubmed.ncbi.nlm.nih.gov/39134239/