Abstracts

Rationale: Epilepsy is a relatively common neurological disorder. Despite considerable advances in our understanding and management of epilepsy, there remains significant misinformation and persistent stigma. A considerable amount of public information and education is obtained today through the internet. Therefore we sampled YouTube (www.youtube.com), a video sharing website and one of the most popular websites worldwide, to determine what information is being disseminated and discussed about epilepsy in this public domain. Methods: Using number of “hits”, under the search terms epilepsy and seizures, we identified the top 10 most viewed videos on YouTube. Since ”hits” only indicates that the webpage and video were opened but not necessarily completely viewed, we analyzed the number and nature of posted comments as an indication of the video’s impact on the viewer. Each video’s comments were analyzed on two, three-point scales. The first was the emotional impact and was scored as primarily empathetic, neutral or scornful. The second was the information component, and was scored as providing information, neutral, or seeking information. Data from each video also included nature and content of the video, its duration and date of initial posting, number of hits and comments, as well as the increase in hits and comments over a one month period from April 2009 - May 2009. Results: The top 10 YouTube videos are being viewed 3200 times daily. All videos showed statistically significant differences for within variable analysis in at least one variable - empathy or knowledge (P<0 .001). Five videos showed statistically significant within variable differences in both variables (P<0.001). The two variables also appeared to be independent in that videos with high empathy comments were not the most informative in terms of the impact on the viewer. Further assessment revealed that personal and “real life” epilepsy videos, generated the most hits and comments, had the most favorable empathetic scoring, but provided little to no information to viewers. Conversely, videos with the greatest shift in favor of providing information had largely neutral or negative empathy scores. Conclusions: Video sharing websites, such as YouTube, have the potential to both perpetuate and remediate the significant misinformation and persistent stigma surrounding epilepsy. This study underscores the importance of recognizing the significant attributes of videos that engage the viewers. After all the "medium is the (means to the) message".