Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: an online survey

To assess the general population's knowledge regarding the utility and availability of tools to diagnosis endometriosis, with a focus on ultrasound.

An international cross-sectional online survey study was performed between August and October 2019.

5301 respondents, representing 73 countries.

In all, 23 questions survey focused on knowledge of endometriosis diagnosis distributed globally via patient- and community-endometriosis groups using social media.

Descriptive data of the knowledge of diagnostic tools for diagnosing endometriosis, including details about diagnosis using ultrasound.

In all, 84.0% of respondents had been previously diagnosed with endometriosis, 71.5% of whom had been diagnosed at the time of surgery. Ultrasound and MRI were the methods of diagnosis in 6.5% and 1.8%, respectively. A total of 91.8%, 28.8% and 16.6% of respondents believed surgery, ultrasound and MRI could diagnose endometriosis, respectively (more than one answer allowed). In those diagnosed by surgery, 21.7% knew about ultrasound as a diagnosis method, whereas in those diagnosed non-surgically, 51.5% knew (P < 0.001). In all, 14.7%, 31.1% and 18.2% stated superficial, ovarian and deep endometriosis could be diagnosed with ultrasound (32.9% stated they did not know which phenotypes of endometriosis could be diagnosed). Lastly, 58.4% of respondents do not believe they could access an advanced ultrasound in their region.

There is a limited appreciation for the role of non-surgical diagnostic tests for endometriosis among lay respondents to this survey.

International survey shows limited awareness of lay respondents about non-surgical endometriosis diagnostic tools.