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Comparison of patient- and physician-based descriptions of symptoms of endometriosis: a qualitative study

STUDY QUESTION How do fully-comprehensive patient-centred descriptions of the symptoms of endometriosis compare with the physicians’ description of the symptoms? SUMMARY ANSWER The description of the painful symptoms due to endometriosis is based on numerous distinct parameters. The way these are us...

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Published in:Human reproduction (Oxford) 2013-10, Vol.28 (10), p.2686-2694
Main Authors: Fauconnier, Arnaud, Staraci, Stéphanie, Huchon, Cyrille, Roman, Horace, Panel, Pierre, Descamps, Philippe
Format: Article
Language:English
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Summary:STUDY QUESTION How do fully-comprehensive patient-centred descriptions of the symptoms of endometriosis compare with the physicians’ description of the symptoms? SUMMARY ANSWER The description of the painful symptoms due to endometriosis is based on numerous distinct parameters. The way these are used to describe symptoms and the way they are interpreted varies significantly between patients and clinicians. The descriptions of severe pelvic pain and dysmenorrhoea and dyspareunia by the clinicians were incomplete compared with those of the patients. WHAT IS KNOWN ALREADY Painful symptoms due to endometriosis were found to be of little use to predict the location and severity of the disease. Currently there are few data on the patients’ description of symptoms and no questionnaire is available to derive data from patients. STUDY DESIGN, SIZE, DURATION Descriptions of painful symptoms by patients and by physicians were obtained by qualitative, interview-based study and analysed using Colaizzi's method. The patients planned to be operated on for painful endometriosis were volunteers for preoperative interview. They were recruited by purposeful sampling to represent different types of endometriosis [i.e. superficial endometriosis, ovarian endometriosis or deeply infiltrating endometriosis (DIE)], the women were selected so that at least five sites of endometriosis were included in the study. The clinicians were experts in endometriosis management. PARTICIPANTS/MATERIALS, SETTING, METHODS Forty-one patients were recruited, in four reference centres. Among them, 33 had DIE in various locations, including intestinal endometriosis (n = 12) or bladder endometriosis (n = 5), 14 had ovarian endometriosis (including three without associated DIE) and 5 had only superficial endometriosis. The nine experts were French-speaking gynaecological surgeons practicing in university teaching hospitals (seven), a general hospital (one) or a private centre (one). MAIN RESULTS AND THE ROLE OF CHANCE In total, 47 themes were identified of which 30 were perceived by both patients and clinicians, 12 by patients only and 5 by clinicians only. Themes fall into five general categories: (i) severe pelvic pain and dysmenorrhoea, (ii) dyspareunia, (iii) gastro-intestinal symptoms, (iv) bladder symptoms, (v) other symptoms. Patients’ and clinicians’ descriptions of symptoms were in agreement for general categories, but the clinicians’ comprehensive description was incomplete, in particular co
ISSN:0268-1161
1460-2350
DOI:10.1093/humrep/det310