Exploring arteriovenous malformations patient sentiments through 1401 social media posts

Introduction: Social media has allowed patients with rare diseases to connect and discuss their experiences with others online. This study analyzed various social media platforms to better understand the patient's perception of arteriovenous malformation.

Methods: Twitter, Instagram, and TikTok were searched to find posts about patients' experiences with arteriovenous malformations (AVM). Posts unrelated to the patient's experience were excluded. Posts were coded for the relevant themes related to their experience with the disease, as well as engagement, and gender.

Results: The most common theme was raising awareness about the condition (87.0%). Recounting symptoms (50.2%), spreading positivity (17.5%), and survival (8.3%) were other common themes. Other prevalent themes were pain (5.2%) and fear of a rare disease (3.5%). Approximately half of AVM-related Instagram (47.93%) and TikTok (52.94%) posts raised awareness about the condition. Most Instagram (67.75%) and TikTok (89.71%) posts focused on recovery and rehabilitation. Most TikTok posts discussed "survival" or "death" (57.35%), while the majority focused on spreading positivity (79.41%). Most posts were made by women (69.6%). Females were more likely than males to post about the scientific explanation of AVMs (p = 0.003).

Conclusion: Social media allows patients across the country and the globe to discuss their experiences with uncommon diseases and connect with others. It also allows AVM patients to share their experiences with other patients and the public.