Page 37 - Diagnostic delay of endometriosis
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medical staff with sufficient knowledge and skills to adequately acknowledge presented symptoms or clinical findings and initiate appropriate actions.
Introduction
Endometriosis is one of the most prevalent gynaecologic conditions in women of reproductive age, and the most common cause of chronic
pelvic pain.1-3 Symptoms related to endometriosis commonly include dysmenorrhoea, pelvic pain, dyspareunia and infertility but a wide spectrum of physical symptoms may be involved 3,4. Women with endometriosis experience a decreased quality of life, and considerable loss of work productivity with associated costs have been identified.5-8 Unfortunately, endometriosis is characterized by a long interval between onset of symptoms and diagnosis.6,9-12 This diagnostic delay is partly due to factors related to the condition itself, like the variable symptom pattern, whether or not subfertility is present, and the fact that invasive diagnostic testing using laparoscopy has been the gold standard for diagnosis.9,13 Factors related to the health care organisation, the patients’ help seeking behaviour and medical professionals’ clinical strategies including referral habits have been proven of great importance as well. 9,10,12,14 Research concerning endometriosis tends to focus on pathogenesis and medical strategies for diagnosis and treatment. However, recent studies on quality of care in endometriosis have shown increased interest in patient-centeredness.15-19 A systematic review on patient-centeredness of endometriosis care revealed that the most frequently reported improvement targets were ‘timely diagnosis’ and ‘being believed and respected by medical professionals.15 Although several studies have addressed these items 9,10,12,20,21, more in- depth information regarding delays in diagnosing endometriosis from
the patients’ perspective is needed to propose relevant interventions
for improvement. The aim of this study was to identify strengths and weaknesses in the current diagnostic process of endometriosis from the patients’ perspective, covering both their own help seeking behaviour and their experience with medical professionals on their journey towards the diagnosis of endometriosis.
Materials and Methods
Study design and data collection
Focus group interviews with women between 18 and 45 years old, who
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