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YouTube作为脑瘫患者信息的来源

YouTube as a Source of Patient Information for Cerebral Palsy.

作者信息

Stelmach Julia, Rychlik Jakub, Zawadzka Marta, Mazurkiewicz-Bełdzińska Maria

机构信息

Department of Developmental Neurology, Medical University of Gdansk, 80-952 Gdansk, Poland.

出版信息

Healthcare (Basel). 2025 Jun 23;13(13):1492. doi: 10.3390/healthcare13131492.

Abstract

Social media has significantly enhanced access to medical knowledge by enabling rapid information sharing. With YouTube being the second-most popular website, we intended to evaluate the quality of its content as a source of information for patients and relatives for information about cerebral palsy. The first 30 videos for search terms "Cerebral palsy", "Spastic cerebral palsy", "Dyskinetic cerebral palsy", "Worster-Drought syndrome", and "Ataxic cerebral palsy" were selected for inquiry. Out of 150 films, a total of 83 were assessed with a mixed method approach by two independent raters utilizing evidence-based quality scales such as Quality Criteria for Consumer Health Information (DISCERN), the Journal of the American Medical Association instrument (JAMA), and the Global Quality Score (GQS). Furthermore, audience engagement was analyzed, and the Video Power Index (VPI) was calculated for each video. The mean total DISCERN score excluding the final question (subjective assessment of the video) was 30.5 ± 8.7 (out of 75 points), implying that the quality of the videos was poor. The global JAMA score was 2.36 ± 0.57 between the raters. The mean GQS score reached 2.57 ± 0.78. The videos had statistically higher DISCERN scores when they included treatment options, risk factors, anatomy, definition, information for doctors, epidemiology, doctor as a speaker, and patient experience. YouTube seems to be a poor source of information for patients and relatives on cerebral palsy. The analysis can contribute to creating more engaging, holistic, and informative videos regarding this topic.

摘要

社交媒体通过实现信息的快速共享,显著提高了获取医学知识的便利性。由于YouTube是第二大最受欢迎的网站,我们打算评估其内容作为患者及其亲属获取脑瘫信息来源的质量。我们选择了搜索词为“脑瘫”“痉挛性脑瘫”“运动障碍性脑瘫”“沃斯特-德劳特综合征”和“共济失调性脑瘫”的前30个视频进行调查。在150部影片中,共有83部由两名独立评分者采用混合方法,使用基于证据的质量量表进行评估,如消费者健康信息质量标准(DISCERN)、美国医学会工具(JAMA)和全球质量评分(GQS)。此外,还分析了观众参与度,并计算了每个视频的视频影响力指数(VPI)。排除最后一个问题(视频的主观评估)后的DISCERN总分平均值为30.5±8.7(满分75分),这意味着这些视频的质量较差。评分者之间的JAMA全球评分为2.36±0.57。GQS平均得分为2.57±0.78。当视频包含治疗方案、风险因素、解剖结构、定义、医生信息、流行病学、医生作为主讲人以及患者经历时,其DISCERN得分在统计学上更高。YouTube似乎是患者及其亲属获取脑瘫信息的不良来源。该分析有助于制作关于该主题更具吸引力、全面且信息丰富的视频。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c3d5/12248971/5c65f8ed6b35/healthcare-13-01492-g001.jpg

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