{"paper_id":"d4ae7440-e972-478e-8ee7-ae557ffda58e","body_text":"Gynecol Surg (2004) 1:171–173\nDOI 10.1007/s10397-004-0039-7\nORIGINAL ARTICLE\nJames Daniel English · Jolyon Ford\nCentres of excellence for the management of advanced endometriosis:\nwhere are they and what do they do?\nPublished online: 24 July 2004\n/C23 Springer-Verlag Berlin / Heidelberg 2004\nAbstract We examined how advanced endometriosis is\nmanaged in the United Kingdom, and what support exists\nfor the development of centres of excellence. A ques-\ntionnaire was sent to all 1,447 registered consultants in\nthe United Kingdom. Of the 617 who replied some 505\ntreated endometriosis, representing 267 of the 341 hos-\npitals listed. Of the consultants 157 (31%) felt that they\nworked in a centre of excellence, representing 94 of the\n267 hospitals. There were 169 consultants who treated\nrectovaginal disease themselves, but only 66 used exci-\nsional procedures. Support was expressed by 429 con-\nsultants (84.9%) for the development of centres of ex-\ncellence for the treatment of advanced endometriosis.\nKeywords Centres of excellence · Endometriosis ·\nSurvey\nIntroduction\nThe management of advanced endometriosis poses sig-\nnificant challenges to the clinician. Women are often\nin considerable pain and have a dramatically impaired\nquality of life [1]. The surgery to excise disease, which is\noften close to or involving the rectum, is often technically\ndifficult. In our experience women often need consider-\nable support for their physical and emotional needs as\nwell as assistance with chronic pain management. Be-\ncause of these challenges the Royal College of Obstetri-\ncians and Gynaecologists recommends that “severe cases\nof endometriosis should be referred to centres of excel-\nlence where relevant clinical expertise is available” [2].\nOn 30 April 2003 the All-Party Parliamentary Group on\nEndometriosis met for a seminar at the Houses of Par-\nliament, London. It concluded that a network of centres of\nexcellence should be developed in the United Kingdom.\nCurrently there is no formal criterion by which a centre of\nexcellence should be defined, nor precisely what role it\nshould have. To complicate matters further, there is\nconsiderable variation in the techniques used to manage\nadvanced and particularly rectovaginal disease, with no\nconsensus or randomised trials to identify the most ef-\nfective treatment.\nThe aim of this study was to shed some light on how\nthe most advanced endometriosis is managed in the United\nKingdom. We use the example of endometriosis which\ninvolves the rectum or pre-rectal fascia (also known as cul\nde sac or rectovaginal disease) as a benchmark for this, as\nwe feel that it is one of the most technically challenging\ntypes of endometriosis to manage. We also aimed to assess\nthe professional support for the development of a network\nof centres of excellence and to identify what services these\ncentres should offer.\nMethods\nA database of the postal address and hospital of all practising\nconsultants in the United Kingdom was obtained from the Royal\nCollege of Obstetricians and Gynaecologists. A total of 1,447\nconsultants were identified from the database, and these received\nby post a questionnaire which had been approved by the College\nand the National Endometriosis Society. We received 617 replies.\nExcluding those who had retired, had moved, or did not practice\nany gynaecology, we identified 505 consultants who treated pa-\ntients with endometriosis. These represented 267 (78%) of an\nidentified 341 hospitals in the UK.\nThe questions asked were in three groups. Firstly, consultants\nwere asked to estimate the number of women with endometriosis\nwhom they treated in the past year, as well as the number with stage\nIII, IV (using the revised American Fertility Society classification)\nor rectal disease. They were asked whether they saw tertiary re-\nferrals, and whether they considered their hospital to be a centre of\nexcellence in the treatment of endometriosis. A definition of a\ncentre of excellence was deliberately not given. Secondly, they\nwere asked about their management of endometriosis which in-\nvolved the rectum or prerectal fascia. Finally, they were asked\nwhether they felt there should be a network of centres of excellence\nto manage advanced endometriosis, and what services they should\noffer. Free text comments were recorded.\nJ. D. English ( )) · J. Ford\nGynaecology, Worthing Hospital,\nLyndhurst Road, Worthing, West Sussex, BN11 2DH, UK\ne-mail: James.English@btinternet.com\nTel.: +44-1903-285190\n\nResults\nThe responding consultants reported treating an estimated\n22,596 cases of endometriosis in the past year, with a\nmean of 48.5 cases each. Of these, 4,129 (18.3%) were\nstage III or IV, and 1,047 (4.6) affecting the rectum.\nOf the respondents 157 (31%) felt that they worked in a\ncentre of excellence, representing 94 (35%) of the hospi-\ntals identified. When asked how they would manage dis-\nease involving the rectum or prerectal fascia, 156 (30.9%)\nwould refer to another hospital, 119 (23.7%) to a col-\nleague, and 53 (10.5%) to general surgeons. In 169 cases\n(33.4%) the consultants treated rectal or prerectal disease\nthemselves; of these 67 used excisional procedures\n(shaving the prerectal fascia, disk or segmental rectal re-\nsection). Details of the surgical procedures used are listed\nin Table 1. Medical treatment was used by 128 consul-\ntants, including gonadotropin-releasing hormone ana-\nlogues ( n=127), danazol ( n=26), the combined oral con-\ntraceptive pill ( n=44) and progestogens ( n=38). When\nasked whether they thought there should be a network of\nidentified tertiary referral centres which have the skills\nand services to both manage advanced endometriosis and\ntrain others in the advanced surgical skills required, 429\n(84.9%) replied yes. It was considered appropriate for the\nfollowing services to be offered: gynaecological ( n=452),\ncolorectal ( n=430), pain management ( n=352), specialist\nnursing ( n=347), pain counselling ( n=316), urological\n(n=284), infertility ( n=286), research coordinating ( n=\n283), psychotherapeutic ( n=188) and complementary ( n=\n160).\nDiscussion\nThe findings of this survey demonstrate a wide variation\nin the way in which advanced endometriosis is managed\nby consultants in the United Kingdom, and that one-third\nof hospitals represented are considered by their consul-\ntants to be centres of excellence. In spite of this only 66\n(13%) of those treating endometriosis offer excisional\nsurgery for rectal or prerectal disease. If a network of\ncentres is to be established, a formal definition is re-\nquired. We propose that a centre of excellence would\nneed to have the facilities to offer the complete range of\nmedical and surgical treatments available for women with\nadvanced endometriosis. Treatment should be as radical\nor as conservative as the woman chooses and should not\nbe limited by the gynaecologist’s unfamiliarity with\ntechniques used to treat advanced disease. The centre\nshould be able to offer the complete surgical excision of\nall visible disease, which in the case of rectovaginal en-\ndometriosis may require dissection of the rectovaginal\nseptum and possible rectal surgery. If gynaecologists do\nnot have the confidence or necessary skills to perform\nperirectal surgery themselves, there should be adequate\nintraoperative colorectal surgical support, as referring on\nfor a postoperative surgical review would potentially re-\nsult in additional surgical procedures for patients. A\nmultidisciplinary team is essential to address the various\nneeds of women with advanced disease. Consultant gy-\nnaecologists in the United Kingdom feel that a colorectal\nsurgeon is the most important additional member of the\nteam, followed by a pain management team, a specialist\nnurse, and some access to counselling. The opinion was\nexpressed by 32% that access to complementary therapies\nshould also be incorporated in the service.\nMany units in the United Kingdom offer services for\nwomen with advanced disease, but the developing a net-\nwork of centres would be aimed principally at achieving\nequality of access for patients. A network should be\nreadily accessible for patients, their general practitioners\nand other gynaecologists, and it should be easy to identify\nwhat services individual centres are offering. The Royal\nCollege of Obstetricians and Gynaecologists has empha-\nsised the importance of involving patients in the estab-\nlishment of services [3], and it would be essential to\nmaintain input from individual patients and their support\ngroups during the development of any network. There is\nevidence that surgical excision of advanced endometriosis\nimproves pain and quality of life [1, 4]. In our own\npractice, women having excisional surgery show an 86%\nimprovement, with those having a disc or segmental re-\nsection of the rectum having significantly better pain\nscores and quality of life than those having shaving of the\nprerectal fascia [4]. The method and the extent of resec-\ntion required is still a matter of debate [5]. In light of this,\nall centres treating advanced disease should continuously\nmonitor and audit their methods, complications and re-\nsults.\nReviewing the free text comments highlighted the\nconcerns which some consultants have about centres of\nexcellence causing a reduction in the skills in peripheral\nunits. A more positive way of viewing centres of excel-\nlence would be as providing skills to treat the endome-\ntriosis which peripheral units may not feel confident in\nmanaging themselves. Additionally, they should offer\nback-up, support and most importantly advanced training\nTable 1 Number of consultants\nusing different methods used to\ntreat endometriosis affecting the\nrectum or prerectal fascia (one\nor more options may have been\nselected where appropriate)\nLaparoscopy Laparotomy\nAblation 40 (47%) 19 (16%)\nShaving of prerectal fascia 40 (47%) 31 (25%)\nDisc resection of rectal wall 11 (13%) 12 (10%)\nAnterior rectal resection 8 (9%) 18 (15%)\nCombined with colorectal surgeons 50 (59%) 99 (81%)\nTreat all disease except that involving the rectum\nand refer to colorectal surgeons\n19 (22%) 22 (18%)\n172\n\nto those wishing to specialise in the surgical treatment of\nadvanced endometriosis and those working in other hos-\npitals. The majority of other comments noted that ad-\nvanced endometriosis is treated with varying efficacy\nacross the country and encouraged the urgent establish-\nment of a network of centres. With growing pressure from\npatients and their support groups there now appears to be\na political will to develop such centres. This study has\nalso demonstrated that there is also a professional will to\ndo so. Provided that adequate funding is made available,\nthe development of a network of centres for the man-\nagement of advanced endometriosis has a promising fu-\nture.\nReferences\n1. Garry R, Clayton R, Hawe J (2000) The effect of endometriosis\nand its radical laparoscopic excision on quality of life indica-\ntors. Br J Obstet Gynaecol107:44–54\n2. Kennedy SH, Gazvani MR (2000) The investigation and\nmanagement of endometriosis. Clinical green top guidelines no\n24. Royal College of Obstetricians and Gynaecologists, London\n3. Kelson M (2002) Patient involvement in enhancing service\nprovision. Clinical governance advice no 4. Royal College of\nObstetricians and Gynaecologists, London\n4. Ford J, English J, Miles W, Giannopoulos T (2004) Pain,\nquality of life and complications following the radical resection\nof rectovaginal endometriosis. Br J Obstet Gynaecol 111:353–\n356\n5. Varol N, Maher P, Healey M, Woods R, Wood C, Hill D,\nLolatgis N, Tsaltas J (2003) Rectal surgery for endometriosis—\nshould we be aggressive? J Am Assoc Gynecol Laparosc\n10:182–189\n173","source_license":"CC0","license_restricted":false}