Research Assistant Hospital of the University of Pennsylvania Yardley, Pennsylvania, United States
Introduction: Social media allows patients with rare diseases to connect and share their experience online. This study analyzed various social media platforms to better understand the patient perception of arteriovenous malformation (AVM).
Methods: Twitter, Instagram, and TikTok were searched for posts regarding personal patient experience with AVM. Posts unrelated to patient experience were excluded. A single investigator ultimately reviewed 983 Tweets, 338 Instagram posts, and 68 TikTok videos regarding the patient experience to generate a preliminary list of themes. Posts were coded to none, one, or multiple themes. Statistical analysis regarding poster’s identity and theme prevalence was conducted on Twitter due to high volume of posts.
Results: The most common theme on Twitter was raising condition awareness (87.0%). Recounting symptoms (50.2%) and spreading positivity (17.5%) were also common themes on Twitter. Most Tweets were made by women (69.6%). Many AVM-related Instagram (47.93%) and TikTok (52.94%) posts included raising condition awareness. Most Instagram (67.75%) and TikTok (89.71%) posts focused on recovery and rehabilitation. Many Instagram posts discussed how the experience made them stronger (49.41%). Most TikTok posts discussed “survival” or “death” (57.35%), while the majority focused on spreading positivity (79.41%). Fisher’s exact test was conducted comparing gender and digital engagement with themes. Females were more likely than males to post about the scientific explanation of AVMs (p = 0.003). Inclusion of a scientific explanation of AVMs was predictive of tweets being in the top 100 most engaged (p = 0.002). Posts involving fear of stroke were associated with no engagement (p = 0.04).
Conclusion : Social media allows for patients to discuss their experience with uncommon diseases and connect with others globally. It allows AVM patients to share their experiences with other patients and the public.
