Bird Cylaina E, Kozin Elliott D, Connors Scott, LoBue Christian, Abdullah Kalil
Neurological Surgery, University of Texas Southwestern Medical Center, Dallas, USA.
Otolaryngology, Harvard Medical School, Boston, USA.
Cureus. 2020 Nov 17;12(11):e11530. doi: 10.7759/cureus.11530.
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.
每年约有8万例原发性脑肿瘤被诊断出来。社交媒体为被诊断患有脑肿瘤的患者提供了信息和支持来源；然而，尚未对利用这个平台传播脑肿瘤信息的情况进行评估。本研究的目的是评估与脑肿瘤相关的社交媒体利用情况和内容，重点关注患者的使用趋势。方法：使用两种搜索方法对社交媒体平台进行系统评估：系统人工查询和基于关键词的社交媒体追踪器。搜索词包括脑肿瘤、胶质母细胞瘤、神经胶质瘤和多形性胶质母细胞瘤。对社交媒体内容（包括Facebook页面和群组、YouTube视频以及Twitter或Instagram账户）和帖子的活跃度（以帖子浏览量量化）进行评估，并使用分类框架进行分析。结果：人工搜索和关键词搜索共识别出946个社交媒体内容来源，总参与度为7184846次。社交媒体平台的内容类型存在显著差异。总体而言，YouTube是分享与脑肿瘤相关内容的最大社交媒体平台，重点是手术视频和记录的患者经历。Facebook占患者间支持的大部分，Twitter是科学传播最常见的平台。总体社交媒体内容大多集中在治疗概述和患者体验上。按搜索词评估时，“脑肿瘤”群体的大多数社交媒体帖子分享疾病叙述，而特定于“神经胶质瘤”和“胶质母细胞瘤”的搜索显示教育和治疗帖子的比例更高。结论：本研究对在线脑肿瘤群体利用社交媒体的特征提出了新的观察结果。在线存在一个活跃的患者群体，重点是分享个人叙述、治疗信息、患者间支持、治疗选择和筹款活动。本研究为患者、其家人和卫生专业人员利用社交媒体的作用提供了一个窗口。这些发现展示了Facebook、YouTube和Twitter在迅速变化的社交媒体时代的不同作用及其与神经外科和神经肿瘤学的关系。
