The purpose of this study is to analyze the characteristics, content, and quality of information available on YouTube regarding amyotrophic lateral sclerosis (ALS), and explore the search results and number of views and quality of the videos. A search was performed on YouTube on 10 June 2020, using the search term ''Lou Gehrig's disease" in the Korean language, and the first 100 videos were targeted for analysis. General characteristics (e.g., number of views, video length, etc.) were collected, and upload source, target audience, subject of the video, and quality of the videos using a global quality score (GQS) were assessed. About two-thirds of the videos were for the general public (62.0%), while the other third were made for patients and their families with ALS (38.0%). The mean GQS was 3.70 ± 1.42, and 60 videos were classified as high-quality videos. ALS-related videos on YouTube play a role in raising awareness among the general public of this devastating disease, however, practical information regarding disease management for patients and family is relatively insufficient. The quality and characteristics of the videos varied greatly and sometimes the lowest quality videos were shown in the top pages of search results.
Keywords: Amyotrophic lateral sclerosis; YouTube; information-seeking behavior; motor neuron disease; social media.