Researchers and health care providers know that patients with rare diseases frequently rely on the internet for information on their condition, how it is diagnosed, how it is treated and how to live with a new condition. YouTube is frequently consulted, especially when tasks are being learned, such as mixing medications. But patient-directed YouTube videos on idiopathic pulmonary fibrosis (IPF), a rare disease associated with pulmonary hypertension (PH), can provide incomplete and inaccurate information, a recent study shows.

In this study led by University of British Columbia and also involving the University of Bern, University of Calgary, and University of Toronto, researchers analyzed YouTube videos related to IPF, assessing the reliability of information and the quality of information on various treatment choices and to learn more about how individuals affected by IPF might engage with these videos.

Researchers found that nearly 17% of the videos featured incomplete or inaccurate information, describing non-recommended and/or potentially harmful therapies as valid and potentially beneficial treatments for IPF. Videos that supported the use of non-recommended therapies had higher viewing numbers and user engagement, researchers noted. Researchers also determined that content was more accurate in videos produced by foundations, medical organizations, news organizations and independent medical professionals compared to industry, for-profit organizations and independent non-medical users.

The recent study assessed the following criteria:

  • Reliability
    • Are the aims clear?
    • Does it achieve its aims?
    • Is it relevant?
    • Is it clear what sources of information were used to compile the publication?
    • Is it clear when the information used or reported in the publication was produced?
    • Is it balanced and unbiased?
    • Does it provide details of additional sources of support and information?
    • Does it refer to areas of uncertainty?
  • Quality of Information on Treatment Choices
    • Does it describe how each treatment work?
    • Does it describe the benefits of each treatment?
    • Does it describe the risks of each treatment?
    • Does it describe what would happen if no treatment is used?
    • Does it describe how the treatment choices affect overall quality of life?
    • Is it clear that there may be more than one possible treatment choice?
    • Does it provide support for shared decision-making?
  • Overall Rating
    • Rate the overall quality of the publication as a source of information about treatment choice

In conducting the study, which was recently published by the American Thoracic Society, researchers analyzed the first 200 YouTube videos resulting from the search term “idiopathic pulmonary fibrosis.” 102 videos met the eligibility criteria. To read the full study, visit https://www.ncbi.nlm.nih.gov/pubmed/30608877.