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Cerebral Cavernous Malformations Patient Perception Analysis via Social Media
Avi A Gajjar1, Aditya Jain1, Anthony Huy-Dinh Le1
1Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.
Summary
Patients with cerebral cavernous malformations (CCM) use social media to share experiences, with Instagram being more popular than Twitter. Posts often focus on recovery, symptoms, and life satisfaction, offering insights for physicians.
Area of Science:
- Neurology
- Digital Health
- Patient Advocacy
Background:
- Social media facilitates patient-to-patient and patient-to-public communication.
- Understanding patient experiences with rare diseases like cerebral cavernous malformations (CCM) is crucial.
- Social media platforms offer a unique lens into patient perspectives.
Purpose of the Study:
- To explore patients' experiences with cerebral cavernous malformations (CCM) using social media data.
- To identify themes and trends in how CCM patients share their health journeys online.
- To enhance physician understanding of the patient experience with CCM.
Main Methods:
- Searched Instagram and Twitter for posts related to cavernoma using specific keywords.
- Analyzed 327 Instagram posts and 84 Twitter posts detailing patient experiences.
- Coded posts for relevant themes concerning the patient journey with CCM.
Main Results:
- Instagram was more frequently used than Twitter by CCM patients.
- Postoperative rehabilitation, mobility, symptoms, complications, and life satisfaction were common themes.
- Preoperative discussions focused on symptoms, bleeding fears, and mental health; postoperative discussions highlighted disability.
Conclusions:
- Social media serves as a vital communication channel for CCM patients to share experiences.
- These platforms provide valuable insights into the patient journey, particularly post-surgery.
- Physicians can leverage social media data to better comprehend and address patient needs related to CCM.
