Endometriosis on the Internet – Myths or Facts?

STUDY OBJECTIVE: To determine the extent of misinformation of endometriosis portrayed online by assessing accuracy and completeness of common websites. DESIGN: An online search identified the top 20 websites for 4 search engines. Videos and duplicates were excluded. An 82-item questionnaire with categories for characteristics, diagnosis and treatment assessed accuracy and completeness each for a score out of 15. SETTING: N/A PATIENTS OR PARTICIPANTS: Online review (n=34 websites) INTERVENTIONS: N/A MEASUREMENTS AND MAIN RESULTS: Most websites were news-related (44.1%) and healthcare (26.5%). Websites with affiliations had significantly higher accuracy (15, IQR 0) than those without (12, IQR 4.0) (p=0.001). Healthcare/advocacy websites had significantly higher accuracy (15, IQR 1.25) than other types (13, IQR 4.5) (p=0.034). Those with references had significantly higher completeness (8, IQR 3.0) than those without (4, IQR 2.0). Non-news-related websites had significantly higher accuracy (14, IQR 3.0 vs. 12, IQR 4.0) (p=0.025) and completeness (7, IQR 3.0 vs. 4, IQR 5.0) (p=0.009) than news-related websites. A higher % of complex words (20.0%, IQR 5.71) had significantly higher completeness (p=0.014). A higher Flesch Reading Ease Score (FRES) (45.8, IQR 17.5) trended towards higher completeness (p=0.086). Reported symptoms included dysmenorrhea (97.1%), infertility (88.2%) and dyspareunia (82.4%). Cancer was mentioned in 41.1% of websites. Diagnostic laparoscopy was most commonly reported (91.0%) than ultrasound (88.3%). Common therapeutics included the oral contraceptive pill (79.4%), laparoscopy (70.6%), NSAIDs (67.6%), and GnRH agonists (64.7%). Hysterectomy (59.0%) was mentioned more than progestins (53.0%). Overall, 18/34 (53%) of websites contained inaccurate/misleading statements. CONCLUSION: Certain website characteristics may indicate higher accuracy or completeness such as website type or references/affiliations. Most websites accurately reported symptoms, however misconceptions included a dramatized cancer risk, lack of use of ultrasound for diagnosis, and a false need for diagnostic laparoscopy before treatment. Laparoscopy was mentioned more than common first-line medications. Most websites contained inaccurate/misleading statements which highlights the importance of directing patients to evidence-based resources.