title: Comparison of patient- and physician-based descriptions of symptoms of endometriosis: a qualitative study.
abstract: OBJECTIVE
  How do fully-comprehensive patient-centred descriptions of the symptoms of endometriosis compare with the physicians' description of the symptoms?
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  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).
  
  
  RESULTS
  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 concerning the severe pelvic pain and dysmenorrhoea's themes and the dyspareunia theme. Patients did not report any clear-cut distinction between pelvic pain and dysmenorrhoea and expressed a dimension of suffering and impaired quality of life inherent to painful symptoms.
  
  
  CONCLUSIONS
  Most of the patients in the study had already had treatment for endometriosis, including ongoing hormonal treatment. Furthermore, all but a few patients had documented endometriotic lesions and no specific investigations to eliminate additional causes of functional pelvic pain were done. Finally due to the qualitative design of the study the result must be regarded as inferences.
  
  
  CONCLUSIONS
  The present study provides a first person viewpoint of the painful experience of endometriosis by the patients in a subjective, phenomenological perspective, and points out the differences of perceptions between the physicians and the patients. The considerable variability in patients' descriptions suggests several distinct mechanisms are involved in explaining the pain related to endometriosis. The discordance between clinicians and patients might also reflect this kind of problem with the wording of the items. In future, if the goal is to properly understand the pain experienced by women with endometriosis, assessment tools using the words and phrases used in narratives of pain would potentially be very useful.
  
  
  BACKGROUND
  Funded by IPSEN, Boulogne-Billancourt, France. None of the authors has any conflict of interest to declare.
  
  
  BACKGROUND
  Not applicable.
authors.affiliation: Department of Gynecology & O, bstetrics, Centre Hospitalier Intercommunal de Poissy - Saint-Germain, EA 7285, University of Versailles Saint-Quentin (UVSQ), Poissy, France.
authors.forename: Arnaud
authors.initials: A
authors.lastname: Fauconnier
authors.forename: Stéphanie
authors.initials: S
authors.lastname: Staraci
authors.forename: Cyrille
authors.initials: C
authors.lastname: Huchon
authors.forename: Horace
authors.initials: H
authors.lastname: Roman
authors.forename: Pierre
authors.initials: P
authors.lastname: Panel
authors.forename: Philippe
authors.initials: P
authors.lastname: Descamps
mesh_terms: D004412:Dysmenorrhea / Q000150:complications; D004414:Dyspareunia / Q000150:complications; D004715:Endometriosis / Q000150:complications / Q000473:pathology*; D005260:Female; D006801:Humans; D010146:Pain / Q000150:complications; D010361:Patients; D017699:Pelvic Pain / Q000150:complications; D010820:Physicians; D036301:Qualitative Research; D001745:Urinary Bladder Diseases / Q000150:complications
keywords: dysmenorrhoea; endometriosis; medical history-taking; pelvic pain; qualitative study