YouTube-videos for patient education in lymphangioleiomyomatosis?

Finn M Wilkens; Claudia Ganter; Katharina Kriegsmann; Heinrike Wilkens; Nicolas Kahn; Gillian C Goobie; Christopher J Ryerson; Michael Kreuter

doi:10.1186/s12931-022-02022-9

YouTube-videos for patient education in lymphangioleiomyomatosis?

Respir Res. 2022 Apr 27;23(1):103. doi: 10.1186/s12931-022-02022-9.

Authors

Finn M Wilkens^{1

2}, Claudia Ganter^{1

2}, Katharina Kriegsmann³, Heinrike Wilkens⁴, Nicolas Kahn^{1

2}, Gillian C Goobie^{5

6

7}, Christopher J Ryerson^{8

9}, Michael Kreuter^{10

11}

Affiliations

¹ Center for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
² German Center for Lung Research, Heidelberg, Germany.
³ Department for Hematology, Oncology and Rheumatology, University of Heidelberg, Heidelberg, Germany.
⁴ Department of Pneumology, Allergology and Critical Care Medicine, University Medical Centre, Saarland University, Homburg/Saar, Germany.
⁵ Clinician Investigator Program, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
⁶ Department of Human Genetics, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA, USA.
⁷ Simmons Center for Interstitial Lung Disease, Division of Pulmonary, Allergy and Critical Care Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
⁸ Department of Medicine, University of British Columbia and St. Paul's Hospital, Vancouver, BC, Canada.
⁹ Centre for Heart Lung Innovation, University of British Columbia and St. Paul's Hospital, Vancouver, BC, Canada.
¹⁰ Center for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany. kreuter@uni-heidelberg.de.
¹¹ German Center for Lung Research, Heidelberg, Germany. kreuter@uni-heidelberg.de.

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.

MeSH terms

Humans
Information Dissemination
Lymphangioleiomyomatosis* / diagnosis
Lymphangioleiomyomatosis* / therapy
Patient Education as Topic
Reproducibility of Results
Social Media*
Video Recording