Assessing the knowledge of endometriosis diagnostic tools in a large,
international lay population: an online survey.
Abstract
Objective: To assess the general population’s knowledge regarding the
utility and availability of tools to diagnosis endometriosis, with focus
on ultrasound. Design: An international cross-sectional online survey
study was performed between August and October 2019. Setting and
Population: 5301 respondents, representing 73 countries. Methods: 23
questions survey focused on knowledge of endometriosis diagnosis
distributed globally via patient- and community-endometriosis groups
using social media. Main outcomes and measures: Descriptive data of the
knowledge of diagnostic tools for diagnosing endometriosis, including
details about diagnosis using ultrasound. Results: 84.0% of respondents
had been previously diagnosed with endometriosis, 71.5% of which were
diagnosed at the time of surgery. Ultrasound and MRI were the methods of
diagnosis in 6.5% and 1.8%, respectively. 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
compared to 51.5% knowing in those diagnosed non-surgically
(p<0.001). 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). 58.4% of respondents do not believe they could access an
advanced ultrasound in their region. Conclusions: There are significant
gaps in the understanding of diagnosing endometriosis using non-surgical
tools in this study population.