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.