Buschulte K, Höger P, Ganter C, Wijsenbeek M, Kahn N, Kriegsmann K, Wilkens FM, Fisher JH, Ryerson CJ, Herth FJF, and Kreuter M
Introduction: Many patients use the internet as a source of health information. Sarcoidosis is a complex disease, and internet resources have not yet been analyzed for reliability and content on sarcoidosis., Aims: Our study aimed to investigate the content and the quality of information on sarcoidosis provided by internet resources., Methods: Google, Yahoo, and Bing were searched for the term "sarcoidosis," and the first 200 hits were saved in each case. Those websites that met the inclusion criteria (English language, no registration fees, and relevant to sarcoidosis) were then analyzed by two independent investigators for readability, quality (HON, JAMA, and DISCERN), and content (25 predefined key facts) of the provided information., Results: The websites were most commonly scientific or governmental ( n = 57, 46%), and the median time since the last update was 24 months. Quality was rated with a median JAMA score of 2 (1; 4) and a median overall DISCERN score of 2.4 (1.1; 4.1), both scores represent partially sufficient information. In total, 15% of websites had a HON certificate. Website content measured by the median key fact score was 19 (ranging from 2.5 to 25) with the lowest scores for acute vs. chronic course of the disease, screening for extrapulmonary disease, and diffuse body pain. Poor results were achieved in industry websites and blogs ( p = 0.047) with significant differences regarding definition ( p = 0.004) and evaluation ( p = 0.021)., Discussion: Sarcoidosis-related content of internet resources is partially sufficient; however, several important aspects are frequently not addressed, and the quality of information is moderate. Future directions should focus on providing reliable and comprehensive information on sarcoidosis; physicians from different disciplines and patients including self-support groups should collaborate on achieving this., Competing Interests: KB received payment for lectures from Boehringer Ingelheim and a grant from Sarkoidose-Netzwerk e.V. JF has received grant funding from the University of Toronto and the Canadian Pulmonary Fibrosis Foundation and has received honoraria from Boehringer Ingelheim and AstraZeneca. CR reports grants from Boehringer Ingelheim and Hoffman la Roche; consulting fees from Boehringer Ingelheim, Hoffman la Roche, Astra Zeneca, Veracyte, Ensho, and Pliant Therapeutics; payment for lectures from Boehringer Ingelheim, Hoffman la Roche, and Cipla Ltd.; and support for attending meetings from Cipla Ltd., and Boehringer Ingelheim (unrelated to this submission). FH reports payment for lectures from Astra Zeneca, GSK, and Chiesi and is a part of the Data Safety Monitoring Board from Apogenix. MK reports grants, consulting fees, and payment for lectures from Boehringer Ingelheim and Roche. KK was employed by Limbach Gruppe SE. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Buschulte, Höger, Ganter, Wijsenbeek, Kahn, Kriegsmann, Wilkens, Fisher, Ryerson, Herth and Kreuter.)