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Patient-directed YouTube videos on idiopathic pulmonary fibrosis often misleading

Patient-directed idiopathic pulmonary fibrosis videos posted on YouTube are often inaccurate and provide incomplete information, researchers reported.

Moreover, many of the videos that support the use of nonrecommended therapies have higher viewing numbers and user engagement data.

“Physicians, professional organizations and patient support organizations should be aware that YouTube is frequently used by patients,” Gillian C. Goobie, MD, FRCPC, physician in the division of respiratory medicine at the University of British Columbia, and colleagues wrote in the Annals of the American Thoracic Society. “Developing a tool similar to [the Health on the Net Foundation Code of Conduct] that applies to YouTube videos would improve the ability to critically and rapidly appraise the quality of online video-disseminated information on IPF.”

The researchers sought to evaluate viewer engagement, quality and content of the first 200 YouTube videos on IPF and compare the information with guideline recommendations. They used 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 — to evaluate video quality.

Of 102 videos that met eligibility criteria, median interobserver agreement for content score for each item was 96% with a kappa of 0.85.

Videos only addressed a median 17% of all potential content items highlighted in clinical practice guidelines for IPF. Overall, 66% of videos suggested at least one guideline-recommended therapy for IPF. Conversely, therapies not recommended in clinical practice guidelines were advocated in 17% of videos that had higher viewership and engagement metrics. Specifically, corticosteroids were recommended as a chronic treatment in 5% of videos and N-acetylcysteine in 6% of videos.

Of note, videos produced in North America were most likely to suggest nonrecommended therapies.

Compared with videos produced by industry, for-prot organizations and independent nonmedical users, videos produced by foundations and medical organizations, media organizations and independent medical professionals had higher content scores.

“These are important and novel ndings that identify the limitations and potential risks of using YouTube as a source of information on IPF diagnosis and management,” Goobie and colleagues wrote. – by Jennifer Southall

Disclosures: The authors report no relevant financial disclosures.