Is YouTube a reliable source for patient information in lymphangioleiomyomatosis?

Abstract

<b>Aims and Objectives:</b> Patients frequently use the internet as a source of health information. No studies have evaluated the quality of information on YouTube regarding lymphangioleiomyomatosis (LAM). Our aim was to determine the quality and content of YouTube videos regarding LAM and to compare the information provided with current knowledge about the disease. <b>Methods:</b> The first 200 video hits on YouTube in English for the search term "lymphangioleiomyomatosis“ were evaluated for eligibility. All videos suitable for patient education on LAM were included,. Video quality was analyzed independently by two investigators utilizing the Health on the Net (HONcode) and DISCERN scores and a newly developed LAM-related content score (LRCS) with 31 guideline elements. <b>Results:</b> The analysis included 64 eligible videos. Engagement was generally low, with a median number of views of 408 (range 42-73,943), and a median of 4 likes (range 0-2082). The HON score, which assesses whether websites provide understandable, accessible, and trustworthy health information, found that 2.5% of videos received a low score (0-2), while 10% of videos achieved a high score (&gt;5).&nbsp;For the DISCERN score, which assesses the quality of information about treatment decisions, the median score was 28 (range 15-61, maximum possible score 80). There were large differences in the quality of information, and frequently no sources of information were mentioned. For the LRCS, videos scored a median of 8 points (range 0-29). <b>Conclusions:</b> YouTube as an online resource contribute to the limited and often incomplete information available to patients with LAM, with only a few videos providing high-quality patient-relevant information.