Page 122 - Diagnostic delay of endometriosis

Introduction
Epidemiologic studies indicate a prevalence of endometriosis in women of reproductive age of 2-10% 1,2. Endometriosis is a common cause of chronic pain and infertility.3 Unfortunately, the condition is characterized by a long interval between onset of symptoms and diagnosis.4-7 Determinants of this diagnostic delay are diverse and include factors related to the condition itself, like the variable symptom pattern and age of onset, whether or not subfertility is present and the fact that invasive diagnostic testing is the gold standard for diagnosis. Other factors contributing to the diagnostic delay are directed at patients’ help seeking behaviour, medical professionals’ knowledge and clinical strategies and the funding and organization of the health care system.4,6-9 The achievement of an earlier diagnosis is one of the research goals outlined by several groups of experts in the field of endometriosis.10-12 Although the importance of developing an accurate non-invasive diagnostic test for endometriosis is obvious, in the meanwhile, attention should be paid to personal and clinical aspects of reaching a timely diagnosis as well. Results of previous studies have provided possible explanations for the lengthy delays in the diagnostic process. Literature about potential strategies to reduce the delay, however, is scarce and directed merely at one specific intervention or target audience.13,14 The selection of potential interventions is a delicate procedure, in which several factors need to be taken into account. First, it is impossible to develop a strategy based on evidence, since no direct evidence is available for the efficiency or feasibility of any intervention to reduce diagnostic delay in endometriosis. Furthermore, the diagnostic delay is multifactorial with a diversity of determinants at many different levels which results in preference for a multifaceted strategy.
In similarity to the development of quality indicators, the selection of interventions to reduce diagnostic delay in endometriosis is likely to benefit from a strategy which involves the opinion of different stakeholders, including both patients and health care professionals. Patients and professionals possibly have different views with regard to the best quality of care or a specific (clinical) strategy 15,16 and combining these views may result in a wider range of knowledge and experience. Previous studies from our research group have identified factors related to the diagnostic delay in endometriosis,7,9,17-19 however, a comprehensive strategy to convert these determinants into appropriate actions is lacking. The aim of this study was to select key interventions as a first step in developing a strategy to
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