Endometriosis on the Internet – Myths or Facts?

Trish Dinh, Teresa E. Flaxman, Kelsey Shea, Sukhbir S. Singh
In: Journal of Minimally Invasive Gynecology · 2020 · vol. 27(7) , pp. S109 · doi:10.1016/j.jmig.2020.08.165 · W3097176533
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This study assessed the accuracy and completeness of 34 websites discussing endometriosis, finding that 53% contained inaccurate statements and misconceptions regarding diagnosis and treatment.

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This study evaluated the accuracy and completeness of information regarding endometriosis on the top 34 websites identified by four major search engines. The researchers found that healthcare-affiliated sites and those providing references were significantly more accurate and complete than news-related platforms, although over half of all assessed websites contained misleading statements. Key inaccuracies included an exaggerated emphasis on cancer risk, a lack of mention for ultrasound as a diagnostic tool, and an overrepresentation of laparoscopy compared to first-line medical therapies. This paper is centrally about endometriosis, focusing specifically on the quality and reliability of online patient education resources for the condition.

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Abstract

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.

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endometriosis

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