Page 161 - Diagnostic delay of endometriosis

If I were a post-doc researcher
As a post-doc researcher, I would realize that there is still a lot of work to be done. Efforts should be made to further elucidate the etiology of endometriosis, since this may lead to increased understanding of the evolution of the disease and create possible opportunities for new therapies. Research priorities should obviously include the development of diagnostic and treatment options.
In this thesis, factors contributing to the diagnostic delay of endometriosis and possible targets for reducing the interval between onset of symptoms and diagnosis are presented. The concept “diagnostic delay” remains difficult to quantify. Studies often rely on participants’ memory of the moment when symptoms emerged, which may be difficult to recall with exact accuracy. The patient delay can additionally be assessed by including documentation of symptoms in medical records or prospective recording of symptoms; however both may introduce a certain amount of bias. The identification of the exact moment of diagnosis is equally challenging. Obviously, establishing the diagnosis using the “gold standard” test of histological confirmation of tissue collected at laparoscopy represents an accurate timing of the definite diagnosis. However, suspicion on endometriosis may have arisen based on the presented symptoms or findings of the clinical examination or imaging. If this suspicion leads to the initiation of suppressive medical treatment, should this be considered a provisional diagnosis and therefore the end of the diagnostic period? Adapting this strategy in scientific studies can lead to contamination of the study population with women who may not actually have endometriosis. On the other hand, including women exclusively with laparoscopy proven endometriosis can lead to the selection of only the most severe cases, in which potentially women with a long period of unsuccessful pragmatic therapies are overrepresented. The discovery of a non-invasive diagnostic test with high sensitivity and specificity may overcome this issue. Unfortunately, although some progress is made in this area, no such test is on the verge of being introduced in clinical practice.28 Given the evidence that genetic factors contribute to the individual susceptibility for endometriosis, and the progress that is currently being made in genome-wide association studies, genetic testing may become a cornerstone in identifying women with a predisposition to endometriosis.29-31 A large amount of biomarkers in plasma, tissue or urine have been studied up to date, but none have shown to be of sufficient diagnostic potential yet. The same holds true for miRNAs.28, 32
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