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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 |
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Main Authors: | , , , , , |
Format: | Article |
Language: | English |
Subjects: | |
Citations: | Items that this one cites Items that cite this one |
Online Access: | Get full text |
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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 |
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ISSN: | 0268-1161 1460-2350 |
DOI: | 10.1093/humrep/det310 |