Department of Rheumatology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, S10 2JF, UK.
Centre for Musculoskeletal Research, The University of Manchester, Manchester, UK.
Clin Rheumatol. 2020 Aug;39(8):2363-2367. doi: 10.1007/s10067-020-05023-5. Epub 2020 Mar 9.
Patients are increasingly using internet-based information to inform healthcare utilization and treatment decisions. Our aim was to examine the quality and readability of internet-based information relating to Raynaud's phenomenon (RP) and systemic sclerosis (SSc).
A systematic review of three commonly used search engines (Google®, Yahoo®, and Bing®) using the terms "Raynaud's phenomenon" and "systemic sclerosis" separately. The first 30 websites per search engine were examined. Quality was assessed using the DISCERN questionnaire and readability by the Flesch-Kincaid Grade Level, SMOG Index, Coleman-Liau index, and Flesch Reading Ease score.
Fifty-two studies (30 RP and 22 SSc) were included after duplicates and exclusion criteria were applied. The overall quality of information was low for both SSc and RP (1.99 & 2.21), including in relation to reliability of the literature and information on treatment choices. Readability for RP and SSc was also poor (i.e., the texts were difficult to read) across all of the four methods examined.
Overall, RP and SSc internet-based information is of low quality and inadequate readability. The RP and SSc international community should strongly consider developing an information standard for internet-based resources for healthcare users.
• Patients with SSc and RP are increasingly using internet/online sources of information and support. • RP represents an important opportunity for the early diagnosis of SSc. • The overall quality and readability of internet-based RP and SSc information is poor. • Internet-based RP and SSc information requires improvement to facilitate early diagnosis and inform shared decision-making.
患者越来越多地使用基于互联网的信息来了解医疗保健的利用情况和治疗决策。我们的目的是研究与雷诺现象（RP）和系统性硬化症（SSc）相关的基于互联网的信息的质量和可读性。
使用“雷诺现象”和“系统性硬化症”这两个术语分别对三个常用搜索引擎（Google®、Yahoo®和 Bing®）进行了系统评价。检查每个搜索引擎的前 30 个网站。使用 DISCERN 问卷评估质量，使用 Flesch-Kincaid 年级水平、SMOG 指数、Coleman-Liau 指数和 Flesch 阅读舒适度评分评估可读性。
在应用了重复项和排除标准后，共纳入了 52 项研究（30 项 RP 和 22 项 SSc）。SSc 和 RP 的信息整体质量都较低（1.99 和 2.21），包括文献的可靠性和治疗选择的信息。四种方法检查的 RP 和 SSc 的可读性也较差（即，文本难以阅读）。
总的来说，RP 和 SSc 基于互联网的信息质量低，可读性不足。RP 和 SSc 国际社会应强烈考虑为医疗保健用户制定互联网资源信息标准。
• SSc 和 RP 患者越来越多地使用互联网/在线信息来源和支持。• RP 代表 SSc 早期诊断的重要机会。• 基于互联网的 RP 和 SSc 信息的整体质量和可读性都很差。• 需要改进基于互联网的 RP 和 SSc 信息，以促进早期诊断和告知共同决策。
