Exploring arteriovenous malformations patient sentiments through 1401 social media posts.

Area of Science:

• Medical Social Media Analysis
• Patient-Reported Outcomes
• Rare Disease Communication

Background:

• Social media facilitates connections for rare disease patients.
• Understanding patient perceptions of arteriovenous malformation (AVM) is crucial.

Purpose of the Study:

• To analyze patient perceptions of arteriovenous malformation (AVM) on social media.
• To identify common themes and engagement patterns in AVM patient discussions.

Main Methods:

• Searched Twitter, Instagram, and TikTok for patient AVM experiences.
• Excluded non-patient-related posts.
• Coded posts for themes, engagement, and gender.

Main Results:

• Raising awareness was the most common theme (87.0%).
• Symptom recounting (50.2%), positivity (17.5%), and survival (8.3%) were also prevalent.
• Women comprised most posts (69.6%) and were more likely to discuss scientific aspects (p=0.003).

Conclusions:

• Social media enables global patient connection and experience sharing for rare diseases like AVM.
• AVM patients utilize social platforms to inform others and build community.