Regionalisation of fetal medicine in <scp>A</scp>ustralia and <scp>N</scp>ew <scp>Z</scp>ealand

Intrauterine procedures to treat complications of pregnancy are uncommon, but the variety of potentially treatable fetal conditions and the available interventions are increasing. Intrauterine transfusion for severe red cell isoimmunisation was the first effective fetal intervention and has now evolved into a highly successful procedure performed in most centres providing fetal medicine services. With the advent of high quality ultrasound imaging, recognition of many severe fetal disorders has been possible, and with the advent of prenatal diagnosis has logically followed the potential for fetal therapies prior to birth. Placental laser ablation for twin-twin transfusion syndrome is performed in many centres throughout the world, aided by the development of small-diameter fetoscopes and improved optics. Indeed, placental laser ablation of vascular anastomoses is currently the therapeutic standard for twin-twin transfusion syndrome, supported by the publication of a multicentre randomised controlled trial in 2004.1 The role of temporary tracheal occlusion in the fetus with a severe diaphragmatic hernia is currently being trialled internationally.2 Most fetal interventions are performed either under ultrasound guidance or with fetoscopy: previous studies using open hysterotomy techniques have not been as successful and have potential short- and long-term maternal morbidity. The MOMS trial, a randomised controlled trial for the prenatal treatment of spina bifida, has been the exception to the minimal access treatment pathway, using hysterotomy and direct repair of meningomyelocele.3 Although this study did show some improvement in motor function of the children and a reduction in the need for cerebrospinal fluid shunting, the results were not as impressive as hoped for with such an invasive surgical approach. Other fetal interventions have had more disappointing outcomes and been largely abandoned (eg vesicoamniotic shunting for fetal lower urinary tract obstruction4, 5). Fetal interventional procedures raise several important issues: the need to ensure the technique offers an substantial improvement in fetal outcome – typically necessitating multicentre participation to ensure appropriate case numbers are available for analysis; medical training strategies to ensure the expertise is present to optimise the outcome if the procedure is performed; an appropriate maternal and family counselling process to ensure vulnerable mothers do not embark upon interventions that are not in their best interest; and well-grounded institutional governance and training processes with continual review of outcomes and case numbers to ensure optimal results. All centres providing fetal interventions should be able to meet these baseline criteria, regardless of the complexity of the intervention they offer. In this edition of ANZJOG are two notable case series reporting the outcomes of specialised invasive fetal procedures. In the first of these, a group of CMFM and COGU subspecialists describe the process whereby the three tertiary centres in Melbourne, Victoria came together to plan the rational introduction of a new fetal therapy service therapy for twin-twin transfusion syndrome for the population of Victoria and Tasmania.6 This laudable collaboration led to excellent clinical outcomes and reduced the effect of the learning curve. A similar process was followed in the establishment of the New Zealand Fetal Therapy Program with the national support of the fetal medicine units in that country. In Perth, Western Australia, the most isolated capital city in the world, a fetoscopic surgical unit with a stable team of two operators has been functioning for a decade to provide a statewide service with clinical outcomes comparable to those published in the literature. These three units demonstrate the importance of collaboration between fetal medicine specialists to achieve appropriate clinical outcomes in a relatively small population base. In the second of these case series, a single fetal medicine unit in London, United Kingdom, presents their outcomes for the rare procedure of selective feticide in twin pregnancies.7 This series is notable for the large number of procedures performed at a single fetal therapy centre –many more than would be seen at any centre in Australasia and no doubt due to the larger referral population. It is a cliché to observe that the rational provision of health care in Australia is cursed by our geography – small populations that are widely distributed, increasing subspecialisation and expectations of all levels of health care to be locally available. This conundrum has in the past led to the acceptance of a large number of institutions offering a range of therapies or procedures performed at low volume. Whilst the rationalisation for this has often been to make treatments locally available, as often as not it has really been because clinicians wanted to perform them in their own or their institution's interests. In recent years, there has been a growing body of literature on the effects of the learning curve required by individual surgeons to achieve a plateau of outcomes for a new procedure. It is well accepted in the general surgical literature that a surgeon requires about between 20 and 60 cases to ‘master’ a specialised new procedure,8 and this also applies to procedures in fetal medicine9 (Figure 1).10 Independently, there is also a consistently reported relationship for established procedures between volume of cases through a centre and outcome. Although high and low volume are difficult to define, an example would be that low-volume centres in Canada performing the procedure of pancreaticoduodenectomy at an average of three cases per year reported 2.2 times as many deaths (OR 1.0, 4.7) as centres performing 25 cases per year.11 The attitude of patients also seems to be changing, with the acceptance of the benefits of care by concentrating expertise in specialised centres. Certainly in the authors' experience, no patients have complained about the need to travel to achieve the best outcomes. How then, can it be ethical that there are cities in Australia where rare procedures such as laser therapy for twin-twin transfusion syndrome are offered in more than one centre, or that in one city in Australia, there are six centres offering fetal transfusion procedures despite decreasing number of cases? The simple answer is that it isn't. For new and rare procedures, it is probable that few of these clinicians will ever ‘master’ the procedure – in part to due to the duplication of services. Even if clinicians already experienced at a particular procedure such as fetal transfusion are able to maintain skills, and the duplication of equipment is ignored, it means that it is impossible to locally train the next generation of proceduralists in fetal medicine due to the decreasing numbers of cases. How should we organise care in Australia and New Zealand to improve outcomes in fetal medicine, and whose responsibility is it? How will we be able to effectively introduce new fetal therapies for congenital diaphragmatic hernia (CDH), spina bifida or congenital heart disease if the scientific data support their use? State and federal health authorities are disinterested or powerless, and RANZCOG has not seen it as its core business. Perhaps the answers lie in the successes and failures of the past. In 1999, an attempt was made by NSW Health to coordinate the rationalisation of fetal transfusion services to a small number of centres. This endeavour failed due to a sense that outcomes were not being improved, and by a feeling that the solution had been imposed on clinicians without adequate consultation. By contrast, a representative group of fetal therapy specialists from around Australia met at Sydney Airport in November 2010 to consider which Australian centre(s) would join the Eurofetus randomised trial for fetal treatment of CDH. This meeting decided all centres would support the Mater Mothers' Hospital in Brisbane in joining this trial and refer eligible patients. In return, clinicians would be able to accompany their patients and participate in the surgery. Overseas experience also suggests that clinician led networks are more likely to succeed. The North American Fetal Therapy Network (NAFTNET) and European network (Eurofetus) have demonstrated that through collaborative support networks, research questions regarding the management of rare fetal conditions are more likely to be answered. Whilst not being responsible for clinical governance or centre accreditation, these groups have supported the collection of data and research protocols, as well as promoting communication between centres and the sharing of management protocols. Their structures are such that all members get something out of it – by way of authorship and shared projects. Ironically, not all clinicians in the United States are happy with NAFTNET, and a few have started a separate network. Attempts to set up a similar Australian and New Zealand network have not been successful to date. Perhaps because of the Federal/State divide in health care, no government agency has taken ownership of the organisation and governance of Fetal Medicine Services in Australia. We do not even have an Australian registry of fetal procedures so that it is not known where and how many procedures are being performed, let alone their outcomes. We regard the development and ongoing support of an Australian Fetal Medicine Network as a healthcare priority to ensure that future fetal interventions are safe and sustainable. What is not clear is which organisation would be most appropriate to support or host this Network. This is an area that needs ongoing discussion and planning to provide Australian women and their fetuses with the best clinical care and outcomes. Collaboration of healthcare providers, both interstate and intrastate, is essential to overcome the barriers of our small obstetric population base and the large distances that separate us geographically but not philosophically.

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