TY - JOUR AU - Nascimento, Thiago D AU - DosSantos, Marcos F AU - Danciu, Theodora AU - DeBoer, Misty AU - van Holsbeeck, Hendrik AU - Lucas, Sarah R AU - Aiello, Christine AU - Khatib, Leen AU - Bender, MaryCatherine A AU - Zubieta, jo - kar AU - DaSilva, Alexandre F PY - 2014 DA - 2014/04/03 TI -实时分享和表达偏头痛痛苦在Twitter上:背景:尽管人群研究极大地提高了我们对偏头痛的理解，但它们依赖于回顾性自我报告，这些报告受到记忆错误和实验诱导的偏差的影响。此外，这些研究也缺乏攻击发生的实际时间的细节，以及患者如何表达和分享他们正在遭受的痛苦。目标:随着技术和语言的不断发展，我们分享痛苦的方式也在不断发展。我们试图评估在Twitter上自我报告偏头痛的信息流行病学。方法:在学术环境中训练有素的观察者对连续七天发布的每一条“偏头痛”推文的含义进行分类。主要结果指标包括患病率、对生活方式的影响、语言和在Twitter上实际自我报告偏头痛的时间轴。结果:在总共收集的21741条偏头痛推文中，只有64.52%(14,028/21,741条收集的推文)来自用户实时报告他们的偏头痛发作。其余的帖子是商业的、转发的、一般性的讨论或第三人称的偏头痛，以及隐喻。实际偏头痛职位的性别分布为73.47%女性(10,306/14,028)，17.40%男性(2441/14,028)，0.01%跨性别(2/14,028)。 The personal impact of migraine headache was immediate on mood (43.91%, 6159/14,028), productivity at work (3.46%, 486/14,028), social life (3.45%, 484/14,028), and school (2.78%, 390/14,028). The most common migraine descriptor was “Worst” (14.59%, 201/1378) and profanity, the “F-word” (5.3%, 73/1378). The majority of postings occurred in the United States (58.28%, 3413/5856), peaking on weekdays at 10:00h and then gradually again at 22:00h; the weekend had a later morning peak. Conclusions: Twitter proved to be a powerful source of knowledge for migraine research. The data in this study overlap large-scale epidemiological studies, avoiding memory bias and experimenter-induced error. Furthermore, linguistics of ongoing migraine reports on social media proved to be highly heterogeneous and colloquial in our study, suggesting that current pain questionnaires should undergo constant reformulations to keep up with modernization in the expression of pain suffering in our society. In summary, this study reveals the modern characteristics and broad impact of migraine headache suffering on patients’ lives as it is spontaneously shared via social media. SN - 14388871 UR - //www.mybigtv.com/2014/4/e96/ UR - https://doi.org/10.2196/jmir.3265 UR - http://www.ncbi.nlm.nih.gov/pubmed/24698747 DO - 10.2196/jmir.3265 ID - info:doi/10.2196/jmir.3265 ER -