YouTube-videos for patient education in lymphangioleiomyomatosis?

Abstract

Background: The Internet is commonly used by patients to acquire health information. To date, no studies have evaluated the quality of information available 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 and guidelines about the disease.

Methods: The first 200 video hits on YouTube in English for the search term "lymphangioleiomyomatosis" were recorded. 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) score, which assesses whether websites provide understandable, accessible, and trustworthy health information; the DISCERN score, which evaluates the quality of information about treatment decisions; and a newly developed LAM-related content score (LRCS) with 31 guideline elements.

Results: The search identified 64 eligible videos. The "engagement rate" of 0.3 was low, with a median number of views of 408 (range 42-73,943), a median of 4 likes (range 0-2082), and the majority (53%) receiving a low HONcode score (≤ 2) and only 10% of videos achieving a high score (> 5). The median DISCERN score was 28 (range 15-61, maximum possible score 80), indicating poor video quality and reliability. The median LRCS was 8 (range 0-29, maximum possible score 31) and videos frequently failed to provide sources of information.

Conclusions: Online resources could contribute to the limited and often inaccurate information available to patients with LAM, with only a few YouTube videos providing high-quality patient-relevant information.

Keywords: DISCERN; HONcode; Lymphangioleiomyomatosis; Patient education; Video.

Fig. 1

Flow diagram of YouTube Video selection. Reasons for exclusion of videos are listed on the left side of the arrow

Fig. 2

DISCERN score for English videos. Unsupervised hierarchical clustering was performed by DISCERN score items (rows) and single videos (columns, n = 64). The categorial item scoring ranges between 1 (not addressed/fulfilled) and 5 (fully addressed/fulfilled). The item 2. “aims achieved” was not assessable (NA) scores, when item 1. “Explicit aims” was scored with 1, i.e., criterion not met. The video category is shown in the top row of the heatmap

Fig. 3

HON foundation score for English videos. Unsupervised hierarchical clustering was performed by HON foundation score items (rows) and single videos (columns, n = 64). The video category is shown in the top row of the heatmap

Fig. 4

English videos content evaluation by LAM related content score. Unsupervised hierarchical clustering was performed by LAM related content score items (rows, n = 31) and single videos (columns, n = 64). In order to find potential clustering of video categories and key fact categories, the video category is shown in the top row (academic institution, governmental organization, news/media, independent medical professional, independent non-medical user) and the key fact item category (definition, symptoms, organ involvement/complications, risk factors, evaluation, management, outcome) corresponding to the single LRCS items in the last column of the heatmap. They are grouped into seven key fact categories, which are marked by different colours. The rating for each item (not addressed, partially addressed, fully addressed) is shown by intensity of brown colour (see score)

Fig. 5

Unadjusted linear regression revealed a weak positive correlation between content score and viewing rate. One video with a viewing rate > 500 was excluded from the diagram to keep appropriate scaling