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化脓性汗腺炎在万维网上越来越受到关注:是患者信息的来源?

Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information?

作者信息

Hessam Schapoor, Salem Johannes, Bechara Falk G, Haferkamp Axel, Heidenreich Axel, Paffenholz Pia, Sand Michael, Tsaur Igor, Borgmann Hendrik

机构信息

Department of Dermatology, Venereology and Allergology, Ruhr-University Bochum, Bochum, Germany.

Department of Urology, University Hospital Cologne, Cologne, Germany.

出版信息

Int J Dermatol. 2017 Jul;56(7):726-732. doi: 10.1111/ijd.13601. Epub 2017 Mar 21.

Abstract

BACKGROUND

Gathering health information from Internet websites is increasingly utilized by patients. No data exist about hidradenitis suppurativa (HS)-related online health information. Thus, we aimed to study the quality, popularity, readability, and timeliness of the most frequented websites on HS.

METHODS

Google Trends was used to evaluate the public interest in HS. An Internet search on Google was performed for the terms "hidradenitis suppurativa," "acne inversa," and "Verneuil's disease." Readability scores, HONcode quality certification, Alexa popularity rank, and content were assessed.

RESULTS

Google search queries on HS have steadily risen in the last 10 years. The website analysis revealed 39 unique websites, which were difficult to read. Ten websites (26%) had HONcode quality certification, and the median (IQR) Alexa popularity rank was 48871 (2333-361275). Thirteen websites (33%) yielded disease-specific photos with a median rating between "quite useful" and "uncertain." A therapy option with adalimumab was mentioned on 11 websites (28%).

CONCLUSIONS

In addition to an increasing interest, we found a broad variation in the quality, readability, popularity, and timeliness of content on HS-related websites. Improvement of the quality and readability of HS-related websites is desirable to potentially raise disease awareness and contribute to an earlier presentation of patients suffering with undiagnosed HS.

摘要

背景

患者越来越多地通过互联网网站收集健康信息。目前尚无关于化脓性汗腺炎(HS)相关在线健康信息的数据。因此,我们旨在研究HS最常访问网站的质量、受欢迎程度、可读性和及时性。

方法

使用谷歌趋势评估公众对HS的兴趣。在谷歌上搜索了“化脓性汗腺炎”“反向痤疮”和“韦尔内伊病”等术语。评估了可读性得分、健康在线(HONcode)质量认证、Alexa受欢迎程度排名和内容。

结果

在过去10年中,谷歌上关于HS的搜索查询稳步上升。网站分析显示有39个独特的网站,这些网站难以阅读。10个网站(26%)拥有健康在线质量认证,Alexa受欢迎程度排名的中位数(四分位间距)为48871(2333 - 361275)。13个网站(33%)提供了特定疾病的照片,评级中位数在“非常有用”和“不确定”之间。11个网站(28%)提到了阿达木单抗的治疗选择。

结论

除了兴趣日益增加外,我们发现HS相关网站在内容质量、可读性、受欢迎程度和及时性方面存在很大差异。改善HS相关网站的质量和可读性可能有助于提高疾病认知度,并促使未确诊HS的患者更早就诊。

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