Googling endometriosis: a systematic review of information available on the internet

Journal article

Objective: We aim to evaluate the credibility, quality, readability, and accuracy of online patient information concerning endometriosis. Data sources: We searched the five popular internet search engines: [1] aol.com; [2] ask.com; [3] bing.com; [4] google.com; and [5] yahoo.com. We developed a search strategy in consultation with patients with endometriosis, to identify relevant websites. Website eligibility: Websites containing information related to endometriosis for women with endometriosis or the public. Website appraisal and synthesis methods: Two independent authors screened the search results. Websites were evaluated using validated instruments across four domains, including assessments of: [1] credibility (White Paper instrument; range 0-10); [2] quality (DISCERN instrument; range 0-85); and [3] readability (Flesch-Kincaid instrument; range 0-100). Accuracy was assessed by a prioritized criteria developed in consultation with healthcare professionals, researchers, and women with endometriosis based upon the European Society of Human Reproduction of Endometriosis guidelines (range 0 – 30). We summarized these data in diagrams, tables, and narratively. Results: We identified 750 websites, of which 54 were included. Over a third of websites did not attribute authorship and almost half the included websites did not report the sources of information or academic references. No websites provided information assessed as being written in plain English. A minority of websites were assessed as high quality. A single website provided accurate information, evidentlycochrane.net. Available information was, in general, skewed towards the diagnosis of endometriosis. There were 16 credible websites, however the content limitations were infrequently discussed. No website scored highly across all four domains. Comment: In the unlikely event that a website reports high quality, accurate, and credible health information it is typically challenging for a lay audience to comprehend. Healthcare professionals, and the wider community, should inform women with endometriosis of the risk of outdated, inaccurate, or even dangerous information online. The implementation of an Information Standard will incentivize providers of online information to establish and adhere to codes of conduct.

Authors: Hirsch, M; Aggarwal, S; Barker, C; Davies, C; Duffy, J

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Elsevier
• Journal: American Journal of Obstetrics and Gynecology
• Volume: 216
• Issue: 5
• Pages: 451–458.e1
• Publication date: 2016-01-01
• Acceptance date: 2016-11-03
• DOI: 10.1016/j.ajog.2016.11.1007
• EISSN: 1097-6868
• ISSN: 0002-9378
• Keywords: online information; patients; credibility; accuracy; quality; endometriosis; readability; systematic review