Quality of Publicly Available Information Websites About Congenital Heart Defects Following a Prenatal Diagnosis: Exploration of Central Subjects of Content and Systematic Assessment of Accessibility, Usability, Reliability and the Quality of Written Information
Date Submitted: Aug 30, 2014
Open Peer Review Period: Sep 2, 2014 - Oct 28, 2014
Background: Pregnant women and their partners use the Internet to search for information following a prenatal diagnosis of congenital heart defect. Objective: To explore central subjects of content and to assess the accessibility, reliability, usability and quality of written information on publicly available information websites about congenital heart defects following a prenatal diagnosis. Methods: Following searches in Bing.com and Google.com, websites containing patient information in English were included. Hits ranged from 340 000 – 67 500 000 and the first 50 hits from each search were screened for inclusion (N=600). Thirty-nine percent (236/600) of the hits were irrelevant. A manifest content analysis was performed to explore central subjects of content. The DISCERN instrument was used to assess the quality of information and the LIDA tool was used to assess accessibility, usability and reliability of the included websites. Results: A total of 67 websites were included, of which 37% (25/67) were affiliated to independent information websites, 25% (17/67) charity/private organizations, 25% (17/67) hospitals/clinics, and 13% (8/67) other affiliations. The majority of the websites (76%, 51/67) could not be attributed to an author. The content on the majority of the websites included care and treatment of children with congenital heart defects (88%, 59/67), causes of congenital heart defects (88%, 59/67), symptoms of congenital heart defects (85%, 57/67), prevalence of congenital heart defects (81%, 54/67), potential complications of congenital heart defects (75%, 50/67), prenatal diagnostics/screening methods (72%, 48/67), and specific congenital heart defects (72%, 48/67), whereas <10% included information about termination of pregnancy (6%, 4/67), care during pregnancy (5%, 3/67), and information specifically directed to partners (1%, 1/67). The mean of the total DISCERN score was 27.9 (SD=9.7, Range=16-53). According to the instrument a majority of the websites were categorized as very poor regarding information about effects of no treatment (88%, 59/67), support for shared decision-making (85%, 57/67), achievement of its aims (84%, 56/67), explicit aims (82%, 55/67), risks of each treatment (82%, 55/67), how treatment choices affect overall quality of life (76%, 51/67), and areas of uncertainty (76%, 51/67). The mean of the total LIDA score was 92.3 (SD=13.1, Range=61-127). According to the tool a majority of the websites were categorized as good with regard to registration (97%, 65/67) and browser test (75%, 50/67), whereas a majority were categorized as poor with regard to currency (87%, 58/67), content production (84%, 56/67), and engagability (75%, 50/67). Conclusions: Difficulties in finding relevant information sources using Web search engines and quality deficits on websites are an incentive for health professionals to take an active part in providing adequate and reliable information online about congenital heart defects.