Endometriosis is apparently a hot topic with many scientifical controversies. In addition to the numerous and well organised patient organisations, political action and lobbying has become more prominent over the last years. As a consequence of this Endometriosis has been recognised as a social disease in Italy, while also in the EU endometriosis has been put on the political agenda. Recently the monthly newsletter of the WES had an editoreal criticising amonst other things, quality control in surgery. I quote ” You may have noticed a vicious war is raging. Between surgeons. About excellence………………………. It has even been suggested that there should be a camera in every OR and mandatory video registration to prevent abuse and permit quality control………………”.
To understand this comment insight in the medical politics of endometriosis is necessary.
First endometriosis is a misnomer and not always a disease.. Endometriosis was defined 100 years ago as endometrial cells outside the uterus. which is a microscopical description The real questions remains whether this is a disease, something abnormal. Although this sounds like a scientific discussion concerning pathophysiology, the medico polical background is important to understand .
If typical cystic and deep endometriotic lesions are considered 3 different pathologies and 3 endpoints of a disease, without progress from one to the other the specific symptoms of each entity are straightforward. Endometriosis hence becomes a not recurrent disease, as other benign tumors as myoma’s, if surgery was complete. As for most benign tumors, a medical cure is not very realistic. The technical difficulty of complete laparoscopic excision of deep endometriosis has generated the concepts of the Pelvic Surgeon and of quality control in surgery eg through videorecording.
Considering endometriosis as one disease is based upon the hypothesis of Sampson with important consequences. First subtle lesions are considered (erroneously) a pathology and endometriosis becomes a progressive and recurrent disease. Yet the impression exists that the large majority of gynaecologists supports this concept. Besides the fact that this is the traditional vision since 100 years, we should be aware of the a background of medical politics.
The background of the medical politics of endometriosis
EBM in surgery
Endometriosis is a ‘billion dollar business’ . It is a frequent pathology, with a central role in gynaecology since it is a frequent cause of pain and infertility. Besides the obvious stakeholders as patients, gynaecologists, the farmaceutical industry and the insurances other less well known stakeholders play a role, such as surgery for endometriosis. The development of endoscopic surgery, and the recognition of the technical difficulty of laparoscopic deep endometriosis surgery is changing the organisation of surgery : whereas endometriosis surgery by laparotomy used to be performed by all gynaecologists, deep endometriosis surgery was recognised as level III -the most demanding- surgery in gynaecology. Simultaneously the emphasis of infertility centers has changed away from microsurgery toward IVF.
IVF centers also emphasising excellent surgery have become rare and gynaecologists who are authorities in both surgery and IVF have become almost inxistent. Therefore referrals became moere important. In the absence of this, IVF with a deep nodule in the rectovaginal septum, or incomplete surgery, or liberal use bowel resections might occur.
Quality control of surgery through (mandatory) videoregistration meets strong opposition for several reasons. Besides Medico-legale concerns many are opposed to big brother scenarios. In addition everybody realises that auditing surgery might be used for many other aspects, one of them being that not all specialist should be allowed to perform any kind of surgery.
The DRG, the cost of a surgical intervention, is less publicly known and few realise the direct relationship with quality control. All endometriosis surgery in eg Belgium, also the resection of a deep nodule, is reimbursed a few hundred euro. If however a bowel resection is performed the cost is some 1000 euro, and this nothwithstanding the fact that a nodular resection is more difficult and takes longer. The WES editoreal raised the problem writing “Some of them seem to fear that if bowel resection is paid better than a selective resection of lesions, while being faster and easier, their fellow surgeons would go for an unnecessary bowel resection rather than take the trouble of removing just the invasive process.” Reality is that this important price difference induces a psychological bias, since we all often have the impression that “more expensive must be better”, and that whenever the options are not that clear, bowel resections are favorised, especially when discoid resections mean a referral often to another hospital. More important is that it is impossible the increase the reimbursement of all endometriosis surgery, while the selective increase of the reimbursement of severe endometriosis surgery requires some relationship between cost and severity, something that is difficult without some control of the intervention. In Italy and in the UK discussions are being held to align the reimbursement of severe deep endometriosis nodules (infiltrating the muscle of the bowel) whether performed by bowel resection or nudule excision. This obviously requires videoregistration in order to prevent that a too liberal use of this DRG . Registration would moreover also be important to judge the error in judgment when after a bowel resection, endometriosis is not confirmed by pathology.
Research in endometriosis obviously is important. But research implies grants and money. Again the concept whether endometriosis is a benign tumor (with subtle probably occurring intermittently in all women) or whether implantation is the key initiating factor remains important. Indeed this concepts make research in implantation irrelevant or very important. The same holds true for prevention of implantation to prevent endometriosis. Thus funding risks to shift from implantation to benign tumors. And who decides about direction of research and grants : a majority of specialists . The absence of an animal model is greatly hampering reseach. Also the baboon, which I evaluated is not a useful model since severe forms do not occur and cannot be induced.
Evidence Based Medecine is an argument often used against surgery since RCT are rare. It is beyond the scope of this comment to evaluate in detail RCT and EBM which sometimes has become a religion. In surgery, however, RCT often are on the edge of ethically acceptable and close to impossible since most trials comparing interventions rather compare surgeons since few surgeons are equally used to perforò several types of interventions.
The pelvic Surgeons are a very small minority in the large group of endometriosis specialists. Also the discussion that we need centers of excellent surgery, not centers of excellence in endometriosis, which risk to do more harm than good, reflects this concept.
Those who promote the pelvic surgeon concept and who try to avoid bowel resections are a small group. Indeed since deep endometriosis is a relative rare disease not that many surgeons are necessary to deal with the pathology, while not that many can have a large eperience.
The large majority is opposed to this concept albeit for various reasons.
The bodies involved in education and accreditation The concept of pelvic surgeon indeed does not fit with the actual subspecialties in gynaecology.
Referrals of deep endometriosis. If bowel resections are the recommended treatment, this type of surgery can be done in every hospital since all surgeons are able to do bowel resections. Although it is unclear what role the high reimbursement of bowel resections play, the local relationship between the gynaecologist and the surgeon are influenced by the alternative of referring patient to another hospital instead of doing together a bowel resection.
Most gynaecologists are opposed to a quality control in surgery
The Infertility lobby. Good surgery indeed is a prevention of IVF . An IVF baby is more expensive than a surgery baby. Mundially we are witnessing a shift away from surgery towards IVF that some call a medico industrial complex.
Oncologist are opposed to the concept where oncology would be less a subspeciality including surgery.
Many scientist do not like the concept that subtle endometriosis and implantation are less important, albeit because of their background.
Prof P. R. Koninckx