YouTube® in Spanish as an information source for patients with autoimmune hepatitis

C.E. Lombo-Moreno , O.M. Muñoz-Velandia , D.G. Fernández-Ávila , J.E. Barahona-Correa , H.C. Aranguren , F.A. Avila
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Abstract

Introduction and aim

A large number of patients with autoimmune hepatitis (AH) seek information about their disease on the Internet. The reliability, comprehensiveness, and quality of said information in Spanish has not been studied. Our aim was to describe the characteristics of the information about AH on YouTube®.

Methods

An analytic observational study evaluated videos in Spanish about AH available on YouTube®, describing their general characteristics, viewer engagement, and information sources. Standardized tools were utilized to analyze reliability (DISCERN), comprehensiveness, and overall quality (Global Quality Score [GQS]).

Results

One hundred videos were included, 93% of which provided information from healthcare professionals (group 1), and 7% of which reflected patient opinions (group 2). There were differences in the median reliability (DISCERN 4 vs 2, p ≤ 0.05) and comprehensiveness (4 vs 2, p ≤ 0.05) scores between groups, but equal overall quality (GQS 3 vs 2, p = 0.2). Reliability (DISCERN 4; RIC 3–4) and comprehensiveness (4.5; IQR 3–5) were higher in videos by professional organizations, compared with those by independent users, healthcare information websites, and for-profit organizations (DISCERN 3; IQR 2.5–3.5) (p < 0.001). Reliability (DISCERN 2; IQR 1.5–3), comprehensiveness (2; IQR 1.5–2.5), and quality (GQS 2.5; IQR 1.5–3.5) were lower for videos made by for-profit organizations.

Conclusion

The majority of videos about AH in Spanish on YouTube® have good reliability, comprehensiveness, and quality. Videos created by academic organizations had higher scores, thus their collaboration, with respect to patient opinion videos, is suggested.

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将西班牙语 YouTube® 作为自身免疫性肝炎患者的信息来源
引言和目的大量自身免疫性肝炎(AH)患者在互联网上寻求有关其疾病的信息。目前尚未对西班牙语信息的可靠性、全面性和质量进行研究。我们的目的是描述 YouTube® 上有关自身免疫性肝炎的信息的特点。方法一项分析性观察研究评估了 YouTube® 上有关自身免疫性肝炎的西班牙语视频,描述了它们的一般特点、观众参与度和信息来源。研究采用标准化工具分析可靠性(DISCERN)、全面性和总体质量(Global Quality Score [GQS])。结果共收录了 100 个视频,其中 93% 的视频提供了医护人员的信息(第 1 组),7% 的视频反映了患者的意见(第 2 组)。各组的可靠性(DISCERN 4 vs 2,p ≤ 0.05)和全面性(4 vs 2,p ≤ 0.05)得分中位数存在差异,但总体质量相同(GQS 3 vs 2,p = 0.2)。与独立用户、医疗保健信息网站和营利组织的视频(DISCERN 3;IQR 2.5-3.5)相比,专业组织视频的可靠性(DISCERN 4;RIC 3-4)和全面性(4.5;IQR 3-5)更高(p <0.001)。营利组织制作的视频可靠性(DISCERN 2;IQR 1.5-3)、全面性(2;IQR 1.5-2.5)和质量(GQS 2.5;IQR 1.5-3.5)均较低。学术组织制作的视频得分较高,因此建议他们在患者意见视频方面进行合作。
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