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Is YouTube a sufficient source of information on Sarcoidosis?

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Title: Is YouTube a sufficient source of information on Sarcoidosis?
Authors: Buschulte, Katharina, El-Hadi, Sarah, Höger, Philipp, Ganter, Claudia, Wijsenbeek, Marlies, Kahn, Nicolas, Kriegsmann, Katharina, Goobie, Gillian C., Ryerson, Christopher J., Polke, Markus, Trudzinski, Franziska, Kreuter, Michael
Contributors: Johannes Gutenberg-Universität Mainz
Source: Respir Res
Respiratory Research, Vol 25, Iss 1, Pp 1-9 (2024)
Publisher Information: Springer Science and Business Media LLC, 2024.
Publication Year: 2024
Subject Terms: 070 News media, Sarcoidosis, Video Recording, 610 Medizin, 070 Nachrichtenmedien, Videos, Diseases of the respiratory system, Patient Education as Topic/standards [MeSH], Consumer Health Information/standards [MeSH], Content, Humans [MeSH], Internet/standards [MeSH], Quality, Consumer Health Information/methods [MeSH], Sarcoidosis/diagnosis [MeSH], Video Recording/standards [MeSH], Information, YouTube, Information Dissemination/methods [MeSH], Information Sources [MeSH], Research, Video Recording/methods [MeSH], Social Media/standards [MeSH], Patient Education as Topic/methods [MeSH], Patient Education as Topic, 610 Medical sciences, Humans, Information Sources, ddc:610, Internet, RC705-779, Consumer Health Information, Information Dissemination, ddc:070, Social Media
Description: Background The internet is a common source of health information for patients and caregivers. To date, content and information quality of YouTube videos on sarcoidosis has not been studied. The aim of our study was to investigate the content and quality of information on sarcoidosis provided by YouTube videos. Methods Of the first 200 results under the search term “sarcoidosis,” all English-language videos with content directed at patients were included. Two independent investigators assessed the content of the videos based on 25 predefined key features (content score with 0–25 points), as well as reliability and quality (HONCode score with 0–8 points, DISCERN score with 1–5 points). Misinformation contained in the videos was described qualitatively. Results The majority of the 85 included videos were from an academic or governmental source (n = 63, 74%), and median time since upload was 33 months (IQR 10–55). Median video duration was 8 min (IQR 3–13) and had a median of 2,044 views (IQR 504 − 13,203). Quality assessment suggested partially sufficient information: mean HONCode score was 4.4 (SD 0.9) with 91% of videos having a medium quality HONCode evaluation. Mean DISCERN score was 2.3 (SD 0.5). Video content was generally poor with a mean of 10.5 points (SD 0.6). Frequently absent key features included information on the course of disease (6%), presence of substantial geographical variation (7%), and importance of screening for extrapulmonary manifestations (11%). HONCode scores were higher in videos from academic or governmental sources (p = 0.003), particularly regarding “transparency of sponsorship” (p Conclusions Most YouTube videos present incomplete information reflected in a poor content score, especially regarding screening for extrapulmonary manifestations. Quality was partially sufficient with higher scores in videos from academic or governmental sources, but often missing references and citing specific evidence. Improving patient access to trustworthy and up to date information is needed.
Document Type: Article
Other literature type
Language: English
ISSN: 1465-993X
DOI: 10.1186/s12931-024-02956-2
DOI: 10.1183/13993003.congress-2024.pa2472
DOI: 10.25358/openscience-11149
Access URL: https://pubmed.ncbi.nlm.nih.gov/39252025
https://doaj.org/article/e69f4f2b701143f0b0387a0fa2fa077f
https://pure.eur.nl/en/publications/2c813703-1743-450f-b7cc-1e975c10cb95
https://doi.org/10.1186/s12931-024-02956-2
https://openscience.ub.uni-mainz.de/handle/20.500.12030/11168
https://doi.org/10.25358/openscience-11149
https://repository.publisso.de/resource/frl:6493788
Rights: CC BY
Accession Number: edsair.doi.dedup.....2ccd598dbea2df128095f871f98e89ce
Database: OpenAIRE
Description
Abstract:Background The internet is a common source of health information for patients and caregivers. To date, content and information quality of YouTube videos on sarcoidosis has not been studied. The aim of our study was to investigate the content and quality of information on sarcoidosis provided by YouTube videos. Methods Of the first 200 results under the search term “sarcoidosis,” all English-language videos with content directed at patients were included. Two independent investigators assessed the content of the videos based on 25 predefined key features (content score with 0–25 points), as well as reliability and quality (HONCode score with 0–8 points, DISCERN score with 1–5 points). Misinformation contained in the videos was described qualitatively. Results The majority of the 85 included videos were from an academic or governmental source (n = 63, 74%), and median time since upload was 33 months (IQR 10–55). Median video duration was 8 min (IQR 3–13) and had a median of 2,044 views (IQR 504 − 13,203). Quality assessment suggested partially sufficient information: mean HONCode score was 4.4 (SD 0.9) with 91% of videos having a medium quality HONCode evaluation. Mean DISCERN score was 2.3 (SD 0.5). Video content was generally poor with a mean of 10.5 points (SD 0.6). Frequently absent key features included information on the course of disease (6%), presence of substantial geographical variation (7%), and importance of screening for extrapulmonary manifestations (11%). HONCode scores were higher in videos from academic or governmental sources (p = 0.003), particularly regarding “transparency of sponsorship” (p Conclusions Most YouTube videos present incomplete information reflected in a poor content score, especially regarding screening for extrapulmonary manifestations. Quality was partially sufficient with higher scores in videos from academic or governmental sources, but often missing references and citing specific evidence. Improving patient access to trustworthy and up to date information is needed.
ISSN:1465993X
DOI:10.1186/s12931-024-02956-2