Status of narcolepsy-related information available on the Internet in Japan and its effective use
Status of narcolepsy-related information available on the Internet in Japan and its effective use
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DOI：
10.1111/j.1479-8425.2008.00362.x
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发表时间：
2008-10-01
影响因子：
1.1
通讯作者：
Shimizu, Tetsuo
中科院分区：
文献类型：
--
作者：
Aizawa, Rika;Sunahara, Hideki;Shimizu, Tetsuo
发作性睡病患者经常使用主要由常见症状组成的关键词访问互联网，以便进一步了解他们的疾病。尽管来自不同来源的信息充斥着互联网，但与嗜睡症有关的信息的质量似乎有所提高，有害信息通常不会进入最高访问排名。发作性睡症患者认为互联网上提供的信息是有用的，并希望了解更多关于新的治疗方法、药物和其他发作性睡症患者的情况。与不使用互联网的患者相比，使用互联网的患者从症状出现到明确诊断的时间明显缩短（8.8年对19.8年）。从这个角度来看，我们认为互联网在改善嗜睡症患者的生活质量方面起着重要的作用。患者通常希望了解疾病的遗传性质和治疗方法。有必要准确地评估患者正在寻找什么样的信息，并提供可靠的信息。
Narcolepsy patients often access the Internet using key words mostly consisting of common symptoms in order to further learn about their disease. Although information from diverse sources floods the Internet, the quality of narcolepsy-related information appears to have improved, and harmful information does not often enter the top access rankings. Narcolepsy patients consider the information available on the Internet as being useful and wish to know more about new treatments, drugs, and the situation of other narcolepsy patients. The time from the onset of the symptoms to a definitive diagnosis has been significantly shorter in patients using the Internet compared to those who have not used it (8.8 vs 19.8 years). From this point of view, we believe that the Internet plays an important role in improving the quality of life of narcolepsy patients. Patients often desire information regarding the hereditary nature of the disease and ways to deal with their disease. There is a need to accurately assess what kind of information patients are looking for and to provide reliable information.