YouTube as a source of information for narcolepsy: A content-quality and optimization analysis.

Abstract

YouTube is the world's most popular video-sharing site that in recent years has become an important platform for patients in finding educational information about their disease. The purpose of this study was to assess the quality and reliability of narcolepsy-related YouTube videos. We searched the key terms "Narcolepsy", "Narcolepsy-cataplexy," "Narcolepsy excessive daytime sleepiness" and "Narcolepsy excessive drowsiness" on YouTube. 80 videos were analyzed as they meet the inclusion criteria. Quantitative and qualitative metrics were recorded and the videos were scored using the DISCERN instrument by two independent raters. Our findings show that the majority of videos contained clear information (84%), symptoms (78%) and patient experience (69%). Most videos were published by an educational channel not representing a hospital or clinic (41%) or by a patient suffering from the disease (25%). Videos containing animations had a statistically significant correlation between average daily views (p=.0004) and the video power index (p=.0048), suggesting that this feature increased the popularity among viewers. The mean DISCERN score was 27±8, indicating that the quality of narcolepsy related-videos is poor. Therefore, patients that use YouTube as an educational tool are currently not attaining a comprehensive understanding of the disease. For this reason, we have indicated the top 5 videos that physicians can recommend to their patients. Our paper highlights the gaps of knowledge concerning narcolepsy information on YouTube. Therefore, this information can be used to create better educational content in the future.