Page 43 - Diagnostic delay of endometriosis

Suggested interventions to reduce diagnostic delay
The participants were asked about their suggestions to reduce diagnostic delay in endometriosis. Suggested interventions are given in Table 1. The most important interventions according to the participants were directed at increasing awareness in the general population, and providing medical staff (in particular general practitioners) with sufficient knowledge and skills to interpret presented symptoms or clinical findings correctly. Again, being taken seriously and acknowledgement appeared of major importance.
Discussion
Main findings
This qualitative study has yielded rich and important information about the experiences of women with endometriosis in reaching a diagnosis. The most striking finding was that most of the participants felt they were not taken seriously after disclosure of their symptoms. This influences their bodily perception and self image, and may lead to delayed consultation and referral, especially if their mother or other loved ones do not acknowledge their symptoms correctly. Being taken seriously by the general practitioner was the most frequently used code to label citations from the transcripts, and the second most frequent suggestion for improvement by participants.
Although it was challenging to distinguish patterns or similarities given the unique and complex nature of the participants’ social and medical histories, many women experienced comparable struggles in their journey towards diagnosis. We identified barriers and facilitators at three different levels: the women’s personal level, knowledge and skills of medical professionals, in particular general practitioners, and the interaction between patients and their health care providers. With regard to the women’s personal level, self-recognition and interference of significant others appeared crucial for seeking medical help. For young women, the opinion of their mother turned out to be of key importance for the appraisal of their symptoms. This is an important finding because it may determine time to first consultation. Factors influencing the shift from normalizing of symptoms to help seeking behaviour have been proposed by Manderson et al.25 Of the four catalysts described in the latter study (intercession, social disruption, biographic disruption, and self-recognition), intercession and self-recognition were the most prevalent in our study population. Differentiating between normal and abnormal appeared equally difficult for general practitioners according to the
Strengths and weaknesses in the diagnostic process | 41