Evaluating Quality and Features of Online Information for Primary Ciliary Dyskinesia: A Systematic Global Analysis ‡ Sierra Brinkman, M. Goutaki, V. Gkatzou, E. Grant, L. Peruque, F. Skinner, K. Eustis, M. Elkins, H. McNeill, D. Santini, M. Biglin, L. Kelly, L. Siqueira, J. M. Dickinson, A. P. Freire Project Mentor(s): Ana Paula Freire, PT, MSc, PhD Background: The internet is a widely utilized resource for health information. Rare diseases, most notably diseases that affect multiple organs such as primary ciliary dyskinesia (PCD), are not likely to have sufficient and adequate quality resources to educate those in need of care. Aims: The study aimed to evaluate the quality and main features of global online information regarding PCD. Two independent researchers extracted data from the first ten uniform resource locators (URLs) displayed on the leading search engines (e.g. Google, Bing, Baidu) of each of the 23 randomly selected countries analyzed. Each website was evaluated for specific content related to PCD, and quality was evaluated via the DISCERN instrument. A total of 206 websites were included in our analysis. Continent representation consisted of 27% ( n = 56) of websites originating from Asian countries, 9% ( n = 19) from North America, 22% ( n = 46, 47) each from Africa and Europe, 13% ( n = 28) from South America, and 5% ( n = 10) derived from Oceania. 43% ( n = 90) of websites were identified as a scientific resource, with the least number of websites falling under social media (8.7%), news/media (6.8%), and commercial (3.4%). Treatment option of airway clearance techniques was mentioned in 59% ( n = 122) of websites and antibiotics mentioned in 64% ( n = 132). Overall quality of publications scored 2.03 (± 0.99) on DISCERN, with lowest scores present in quality of treatment information. This study highlights the global differences in online information on PCD, and the necessity for regulation and improvement for comprehensive PCD education and management. Presentation Type: Poster Presentation (May 21, 9:30am–3:00pm) Keywords: credibility, education, primary ciliary dyskinesia, website, quality SOURCE Form ID: 46
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