Interpretation
In a 2016 Cochrane systematic review on non-invasive imaging for endometriosis, it was reported that advanced TVS has a sensitivity of 0.79 (95% CI 0.69-0.89) and a specificity of 0.94 (95% CI 0.88-1.00) in diagnosing deep endometriosis.15 For deep endometriosis, MRI has sensitivity 0.94 (95% CI 0.90-0.97) and specificity of 0.77 (95% CI 0.44-1.00).15 This translates to MRI being overall more likely to detect deep endometriosis, but it does so at the expense of a much larger false positive rate. TVS and MRI are equally effective at diagnosing endometriomas.15 MRI is also considered a reasonable option in some centres, given its performance and cultural considerations, comparable to ultrasound for DE mapping using the IDEA consensus.7 Despite the studies used in this systematic review being published in 2015 or earlier, knowledge translation to the end-users of imaging tests, our patients, remains limited. Among the survey responders, only just over one-fourth knew about the possibility of diagnosis via advanced TVS and less than one-fifth knew about the utility of MRI, and the majority do not believe that sort of advanced TVS could potentially be offered where they live.
We did not inquire about MRI access as we advocate that ultrasound should be considered the first-line imaging modality.16 However, the same obstacles exist with MRI where an expert radiologist is essential to ensure the correct protocol and interpretation for endometriosis.17 We believe the access to endometriosis MRI expertise would match that of advanced TVS.
Online sources are commonly used by people with endometriosis for information about various aspects related to their condition; however their healthcare providers’ knowledge level may also be a relevant factor contributing to the general population knowledge level. In an international survey of gynaecologists, a minority of respondents used advanced TVS or MRI to evaluate patients with suspected endometriosis, and, in some regions, the availability of advanced TVS is potentially as low as 14%.18 As such, we may suspect that gynaecologists are not teaching their patients, either passively or actively, about advanced techniques to diagnose non-invasively. The reason behind that phenomenon is likely to be multifactorial, relating to system differences such as healthcare funding models (e.g. private versus public), training in gynaecological ultrasound19, who is performing/interpreting imaging tests (i.e. sonographer versus radiologist versus gynaecologist), and national clinical practice guidelines.
Demographics likely play an important role in the diagnostic process. Bougie et al . noted significant differences in the likelihood of an endometriosis diagnosis based on race and ethnicity.20 Another factor might be education, which is, of course, intimately related to race, ethnicity, and other socioeconomic factors. In our study, the majority of respondents (68.2%) had post-secondary education. We found no difference in the proportion of post-secondary education in those with a surgical diagnosis compared to those without. However, it is possible that the overall high levels of education of the patients may have helped to more effectively navigate complicated healthcare systems and advocate for themselves to reach surgery (for diagnostic or therapeutic purposes) in their care pathway. Even in this highly educated cohort, 54.0% learned something from the content within the survey. With internet resources considered the primary source of information, this demonstrates the potential role of open web-based educational platforms. As this study only investigated country of residence, with a majority of responses from racially and ethnically diverse countries such as Australia, United Kingdom, Canada, and the United States of America, we cannot exactly comment on racial or ethnic differences. However, the diagnostic and care pathway for patients of various racial and ethnic backgrounds warrants study.
The approach to diagnosing endometriosis is changing.21 While diagnostic laparoscopy is often used, it is used less as a diagnostic procedure and more when surgical treatment is indicated.22 However, this is problematic because it leaves individuals undiagnosed unless they fit surgical indications. Moreover, without using preoperative diagnostic tools, there is a chance a diagnostic laparoscopy with planned treatment may be incomplete or abandoned due to surprisingly advanced disease.23 Advanced imaging could represent a breakthrough in the former two-step approach of diagnostic and treatment laparoscopies, highly reducing the risks and the cost of care for patients.24
It would be essential to consider that, in the opinion of the vast majority of the respondents, the internet and the gynaecologist would be the chosen sources to acquire further knowledge on endometriosis. However, there is evidence that might be significant impairment in the quality and credibility of the internet’s information related to endometriosis and other gynaecological conditions.25–27 We cannot not emphasise enough the importance of continuous education programmes of health care professionals and gynaecologists to increase the availability of recent advancements of diagnostic tools for endometriosis.28