A Quantitative Analysis of Social Media to Determine Trends in Brain Tumor Care and Treatment

Background Approximately 80,000 primary brain tumors are diagnosed annually. Social media provides a source of information and support for patients diagnosed with brain tumors; however, use of this forum for dissemination of information about brain tumors has not been evaluated. The objective of this study was to evaluate social media utilization and content related to brain tumors with an emphasis on patients’ trends in usage. Methods Social media platforms were systematically evaluated using two search methods: systematic manual inquiry and a keyword-based social media tracker. The search terms included brain tumor, glioblastoma, glioma, and glioblastoma multiforme. Social media content (which includes Facebook pages and groups, YouTube videos, and Twitter or Instagram accounts) and posts were assessed for activity (as quantified by views of posts) and analyzed using a categorization framework. Results The manual and keyword searches identified 946 sources of social media content, with a total count of 7,184,846 points of engagement. Social media platforms had significant variations in content type. YouTube was the largest social media platform for sharing content related to brain tumors overall, with an emphasis on surgical videos and documented patient experiences. Facebook accounted for the majority of patient-to-patient support, and Twitter was the most common platform for scientific dissemination. Overall social media content was mostly focused on treatment overviews and patient experience. When evaluated by search term, most social media posts by the “brain tumor” community shared illness narratives, and searches specific to “glioma” and “glioblastoma” demonstrated a higher proportion of educational and treatment posts. Conclusions This study presents novel observations of the characteristics of social media utilization for the online brain tumor community. A robust patient community exists online, with an emphasis on sharing personal narratives, treatment information, patient-to-patient support, treatment options, and fundraising events. This study provides a window to the role of social media utilization by patients, their families, and health professionals. These findings demonstrate the different roles of Facebook, YouTube, and Twitter in the rapidly changing era of social media and its relationship with neurosurgery and neuro-oncology.