What matters most to cerebral aneurysms patients: A digital analysis of 1127 social media posts

Introduction Social media serves as a way for patients to post about their condition online, as well as for healthcare providers to disseminate information. Intrinsic bias exists exist when patients are given surveys by physicians or healthcare providers. We aim to investigate patient-centered social media posts regarding cerebral aneurysms on Instagram, Twitter, and TikTok. Methods Posts that included “brain aneurysm”, “#brainaneurysm”, “#brainaneurysmsurvivor”, and “#aneurysmsurvivor” were queried on Instagram, Twitter, and TikTok. Any posts unrelated to the patient experience were excluded. Five hundred and fourteen Instagram posts, fourty tweets, and five hundred seventy three TikTok posts about the patient experience were identified. Posts were coded for the relevant themes related to their experience with the disease. Results Most posts made online were by women (892, 82.1%). Patients made the post most of the time (776, 67.5%), while other individuals posted less often (420, 36.5%). The most common themes on Instagram were survival (475, 87.3%), spreading positivity (385, 70.77%), and recovery/rehabilitation (329, 60.5%). TikTok users most often referred to survival (573, 97.1%), raising awareness (464. 78.6%), and spreading positivity (414, 70.2%). Patients were more likely to discuss pre-operative pain (p = 0.0382), postoperative pain (p < 0.0001), invisible illness (p = 0.0130), humor (p = 0.0028), recovery (p < 0.0001), angiograms (p < 0.0001), and resiliency (p < 0.0001) when compared to other individuals posting about a patients' experience. Conclusion Patients often focus on different aspects of their care than do other individuals. This may be useful for physicians discussing treatment plans and prognoses with the patient and their families.