What Are Patients Reading? Quality Assessment of Endometriosis Information on the Internet

OBJECTIVE: Evaluate the quality of information reported online about endometriosis and period pain. METHODS: An online search identified the top 20 websites for 4 search engines (Google, Ask, Bing, Yahoo). Videos, duplicates, and websites not containing information related to endometriosis and period pain were excluded. Three independent authors screened websites and systematically extracted data on website characteristics and on diagnosis and treatment mentions. Website accuracy and completeness were rated for a score out of 15. The Flesch readability ease score (FRES) was used to assess readability. RESULTS: Of 34 websites included, most were news related (44.1%) and health care affiliated (26.5%). Websites with affiliations had significantly higher accuracy scores than those without. Those with references had significantly higher completeness than those without. Non-news-related websites had significantly higher accuracy and completeness than news-related websites. The most commonly reported symptoms were dysmenorrhea (97.1% of websites), infertility (88.2%), and dyspareunia (82.4%). Cancer was mentioned on 41.1% of websites. Diagnostic laparoscopy (91.0%) and ultrasound (88.3%) were the most commonly mentioned diagnostic tools. Commonly reported therapeutics included the oral contraceptive pill (79.4%), laparoscopy (70.6%), non-steroidal anti-inflammatory drugs (NSAIDs; 67.6%), and gonadotropin-releasing hormone (GnRH) agonists (64.7%). Hysterectomy (59.0%) was mentioned more than progestins (53.0%). Overall, 18 of 34 websites (53%) contained 1 or more inaccurate or misleading statements. CONCLUSION: While most websites contained accurate statements, commonly reported misconceptions included an emphasized risk of cancer, lack of use/benefit of ultrasound for diagnosis, and a bias for surgical over medical management, where laparoscopy was mentioned more than first-line medications. This study highlights the importance of directing patients to evidence-based resources.