• Gillian C Goobie, Sabina A Guler, Kerri A Johannson, Jolene H Fisher, and Christopher J Ryerson.
• 1 Department of Medicine and.
• Ann Am Thorac Soc. 2019 May 1; 16 (5): 572-579.

AbstractRationale: Patients frequently use YouTube as a platform for dissemination and consumption of health information. Caregivers and patients affected by idiopathic pulmonary fibrosis (IPF) are likely consumers of this information. Objectives: We aimed to determine viewer engagement, quality, and content of YouTube videos on IPF and to compare the provided information with contemporaneous guidelines. Methods: We analyzed the first 200 YouTube videos resulting from the search term "idiopathic pulmonary fibrosis." Patient-directed videos containing any information on IPF were eligible. Each video was evaluated for content related to IPF features and treatments that are discussed in clinical practice guidelines, as well as nonrecommended treatments. Video quality was assessed using an adapted Health on the Net Foundation Code of Conduct (HONCode) scoring instrument and the validated DISCERN instrument (a questionnaire that evaluates the quality of consumer health information). Details of the video source and viewer engagement metrics were recorded for each video. Results: A total of 102 videos met eligibility criteria. No videos assessed all content topics, with videos addressing a median of 17% of all potential content items that were highlighted in clinical practice guidelines. Content scores were higher in videos produced by foundations and medical organizations, news/media organizations, and independent medical professionals compared with videos produced by industry, for-profit organizations, and independent nonmedical users. Nonrecommended and/or potentially harmful therapies were described as valid and potentially beneficial treatments for IPF in 17% of videos, with higher viewership and engagement metrics for these videos. HONCode and DISCERN scores that assessed for video reliability, credibility, and quality of information, were poor for all video source types but were lower in videos posted by industry/for profit organizations and independent nonmedical users. Conclusions: Patient-directed YouTube videos on IPF frequently provide incomplete and inaccurate information. Videos supporting the use of nonrecommended therapies have higher viewing numbers and user engagement, highlighting the potential risks of using YouTube as a resource for health information. Physicians, professional organizations, and patient support organizations should be aware that YouTube is frequently used by patients. Developing a tool similar to HONCode that applies to YouTube videos would improve the ability to critically and rapidly appraise the quality of online video-disseminated information on IPF.

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