Page 44 - Diagnostic delay of endometriosis

participants. Most of the diagnostic delay in our study consisted of the time between first visit to the general practitioner and referral to a gynaecologist, which is in line with previous studies.9,12 The general practitioner needs to either recognize the presented symptoms as pathological, or acknowledge the significant impact of symptoms on the patient’s life and thereby justify referral for further diagnostic tests.
Diagnostic delay was estimated at 8.5 years in this study, which is comparable with the existing international literature.9-12,26 In the Netherlands, the general practitioner has a strong position with regard to access to medical care, acting as a gatekeeper for medical specialist care. Other countries, including those in which specialist care is freely accessible, show a similar diagnostic delay.9,10,26,27 We suggest that the first medical professional consulted is the medical professional encountering the problem of differentiating between ‘normal’ menstrual complaints and signs or symptoms suggestive of endometriosis. Failure of this process may lead to misdiagnosis and delayed diagnostic tests or treatment.
Strengths and limitations
The importance of findings derived from qualitative research has been increasingly appreciated.22,28 However, careful consideration on study methodology is of great importance in order to secure study validity.24,29,30 To extract the most relevant information from the transcripts and preserve objectivity, we conducted a data-based analysis style by two independent researchers, and all steps of data analysis were discussed with several members of the research team. A wide diversity of aspects relevant to the diagnostic process were discussed in the focus groups, including women’s own appraisal of symptoms, key elements in seeking medical help, and experience with medical professionals, both in primary and secondary care. Some of the participants were treated at the clinic in which one of the researchers was employed. They were informed in advance, encouraged to speak freely, and ensured that their contribution to the discussion would not influence their treatment in any way. These focus groups were moderated by a researcher not employed in the particular clinic if known in advance.
Interpretation
Diagnostic delay in endometriosis has been subject of several studies in the past decades. Even though many contributing factors have been described, the diagnostic delay does not seem to diminish. When asked
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