[The internet as a source of information for patients with sarcoidosis]
Katharina Buschulte1, Philipp Höger1, Sarah El-Hadi1
1German Center for Lung Research (DZL), Thoraxklinik-Heidelberg gGmbH, Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Deutschland, Heidelberg.
Background:
The internet is often used as a source of information by patients with sarcoidosis, but its reliability has not yet been comprehensively analysed. The aim of this study was to analyse the content and quality of German-language information on sarcoidosis available on the internet.
Methods:
All German-language hits from the first 200 search results for "sarcoidosis" on Google, Yahoo, Bing, and YouTube were saved. Two independent investigators evaluated the content (content score with 25 items, 0-25 points) and quality (DISCERN score with 1-5 points, HONCode score with 0-8 points, JAMA score with 0-4 points).
Results:
128 websites and 12 videos were included. The median time since the last update was 36 and 9 months. The content score was 17 and 13 points, respectively. Quality was rated with a DISCERN score of 2.4 and 2.1 points, the JAMA score of the websites was 2 points, and the HONCode score of the videos was 4.2 points. Blogs achieved poorer results in terms of content (p=0.040) and DISCERN score (p=0.016), while the JAMA score was best for news/media (p=0.002). There were no differences for the videos.
Conclusion:
Although some German-language information on sarcoidosis found on the internet was adequate in terms of content, its quality was only moderate. It would be desirable to have a reliable and easily recognisable label for adequate information.
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