Functional neurological disorder on YouTube: how reliable is the information?

YouTube 上关于功能性神经系统疾病的信息:其可靠性如何?

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Abstract

BACKGROUND: Functional Neurological Disorder (FND) is a common and often misunderstood condition characterized by neurological symptoms such as limb weakness, movement disorders, sensory disturbances, and non-epileptic seizures that are not explained by structural neurological disease. Patients increasingly seek information through digital platforms such as YouTube; however, the reliability and educational value of such content remain uncertain. OBJECTIVE: This study aimed to systematically evaluate the quality, reliability, and educational value of English-language YouTube videos on FND using standardized assessment tools. METHODS: A cross-sectional analysis was conducted on the 50 most viewed videos retrieved with relevant keywords. Video characteristics and engagement metrics were recorded. Quality was assessed using the Global Quality Scale (GQS), reliability with the modified DISCERN (mDISCERN), and health information standards with JAMA benchmark criteria. User interaction was measured via the Video Power Index (VPI). Statistical analyses included Spearman correlation, Kruskal-Wallis and Mann-Whitney U tests, with effect sizes reported. Inter-rater reliability was evaluated using ICC and weighted Cohen's kappa. RESULTS: The mean GQS, mDISCERN, and JAMA scores were 3.27, 3.23, and 2.38, respectively, indicating moderate overall quality but suboptimal adherence to health information standards. Producer type did not significantly affect quality scores (p > 0.05), though VPI differed across groups (p = 0.022), with health information channels showing higher engagement. VPI showed strong correlations with both view count and like count. Engagement metrics demonstrated limited association with information quality indicators. Inter-rater reliability was excellent across all instruments (ICC range: 0.882-0.944). CONCLUSION: YouTube hosts a substantial amount of FND-related content; however, overall quality and reliability are inconsistent. Engagement metrics do not reliably reflect informational accuracy. Given the stigma and complexity of FND, reliance on unregulated online content may hinder patient understanding and management. Greater involvement of clinicians and professional organizations in producing evidence-based, patient-centered digital resources is warranted to improve health literacy and outcomes.

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