Meng Ying, Elkaim Lior, Wang Justin, Liu Jessica, Alotaibi Naif M, Ibrahim George M, Fallah Aria, Weil Alexander G, Valiante Taufik A, Lozano Andres M, Rutka James T
Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Ontario, Canada; Institute of Medical Science, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
Division of Pediatric Neurosurgery, Department of Surgery, Sainte Justine Hospital, University of Montreal, Montreal, QC, Canada.
Epilepsy Behav. 2017 Jun;71(Pt A):79-84. doi: 10.1016/j.yebeh.2017.04.033. Epub 2017 May 26.
While the social burden of epilepsy has been extensively studied, an evaluation of social media related to epilepsy may provide novel insight into disease perception, patient needs and access to treatments. The objective of this study is to assess patterns in social media and online communication usage related to epilepsy and its associated topics.
We searched two major social media platforms (Facebook and Twitter) for public accounts dedicated to epilepsy. Results were analyzed using qualitative and quantitative methodologies. The former involved thematic and word count analysis for online posts and tweets on these platforms, while the latter employed descriptive statistics and non-parametric tests.
Facebook had a higher number of pages (840 accounts) and users (3 million) compared to Twitter (137 accounts and 274,663 users). Foundation and support groups comprised most of the accounts and users on both Facebook and Twitter. The number of accounts increased by 100% from 2012 to 2016. Among the 403 posts and tweets analyzed, "providing information" on medications or correcting common misconceptions in epilepsy was the most common theme (48%). Surgical interventions for epilepsy were only mentioned in 1% of all posts and tweets.
The current study provides a comprehensive reference on the usage of social media in epilepsy. The number of online users interested in epilepsy is likely the highest among all neurological conditions. Surgery, as a method of treating refractory epilepsy, however, could be underrepresented on social media.
虽然癫痫的社会负担已得到广泛研究，但对与癫痫相关的社交媒体进行评估可能会为疾病认知、患者需求及治疗途径提供新的见解。本研究的目的是评估与癫痫及其相关主题有关的社交媒体和在线交流的使用模式。
我们在两个主要社交媒体平台（脸书和推特）上搜索了专门用于癫痫的公共账号。使用定性和定量方法对结果进行分析。前者涉及对这些平台上的在线帖子和推文进行主题和字数分析，而后者采用描述性统计和非参数检验。
与推特（137个账号和274,663名用户）相比，脸书的页面（840个账号）和用户（300万）更多。基金会和支持团体在脸书和推特上的账号和用户中占大多数。从2012年到2016年，账号数量增加了100%。在分析的403条帖子和推文中，关于药物“提供信息”或纠正癫痫常见误解是最常见的主题（48%）。癫痫的手术干预在所有帖子和推文中仅被提及1%。
本研究为癫痫领域社交媒体的使用提供了全面参考。在所有神经系统疾病中，对癫痫感兴趣的在线用户数量可能是最多的。然而，作为治疗难治性癫痫的一种方法，手术在社交媒体上的呈现可能不足。
