Department of Rheumatology and Immunology, Singapore General Hospital, Singapore City, Singapore.
Yong Loo Lin School of Medicine, National University of Singapore, Singapore City, Singapore.
Int J Rheum Dis. 2020 Dec;23(12):1636-1644. doi: 10.1111/1756-185X.13852. Epub 2020 May 13.
Many patients turn to online platforms to obtain healthcare information, but the quality and accuracy of the information is largely unknown. The objective of this study was to evaluate the reliability and quality of the most viewed English-language YouTube videos on systemic lupus erythematosus (SLE).
YouTube was searched using keywords "systemic lupus erythematosus" and videos were categorized as useful information, misleading information, useful patient opinion, and misleading patient opinion. Reliability was scored using a modified 5-point DISCERN tool (where higher scores represent greater reliability), while quality was rated using the 5-point Global Quality Scale (GQS). Content covered included epidemiology, pathogenesis, clinical features, diagnosis and treatment of SLE.
Of the top 183 relevant videos, 124 (67.8%) were classified as useful information, 21 (11.5%) as misleading information, 29 (15.8%) as useful patient opinion, 9 (4.9%) as misleading patient opinion. Useful information videos were primarily produced by professionals (62.1%), with videos being of greater reliability and quality than other groups. However, video characteristics collected were largely comparable across all groups. The majority (68.9%) of the videos addressed patients.
Our findings highlight an abundance of YouTube videos with useful information on SLE, that are mostly reliable and of high quality. However, in order to effectively educate patients, pitfalls such as misleading content, falsely elevated video characteristics and non-professional sources need to be made known to patients. As part of holistic care, healthcare professionals should advise patients to seek information from reputed sources.
许多患者转向在线平台获取医疗保健信息,但这些信息的质量和准确性在很大程度上是未知的。本研究的目的是评估系统性红斑狼疮(SLE)最受关注的英语 YouTube 视频的可靠性和质量。
使用关键字“系统性红斑狼疮”在 YouTube 上进行搜索,并将视频分类为有用信息、误导性信息、有用的患者意见和误导性患者意见。使用改良的 5 分 DISCERN 工具(得分越高表示可靠性越高)对可靠性进行评分,同时使用 5 分全球质量量表(GQS)对质量进行评分。涵盖的内容包括流行病学、发病机制、临床特征、SLE 的诊断和治疗。
在 183 个相关视频中,有 124 个(67.8%)被归类为有用信息,21 个(11.5%)为误导性信息,29 个(15.8%)为有用的患者意见,9 个(4.9%)为误导性患者意见。有用信息视频主要由专业人士制作(62.1%),其可靠性和质量高于其他组。然而,收集的视频特征在所有组中基本相似。大多数(68.9%)视频针对的是患者。
我们的发现强调了 YouTube 上有大量关于 SLE 的有用信息视频,这些视频大多可靠且质量高。然而,为了有效地教育患者,需要让患者了解到误导性内容、错误提高的视频特征和非专业来源等陷阱。作为整体护理的一部分,医疗保健专业人员应建议患者从信誉良好的来源获取信息。