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Reading the EUROCAT study

This issue of the White Journal contains a landmark epidemiological study: ‘Prenatal diagnosis of congenital malformations in Europe’1. Whether epidemiological studies are actually noticed by the public depends very much on their subject matter. Studies on the geographical incidence and distribution of sleep apnea and constipation will hardly be noticed outside a narrow circle of specialists and enthusiasts, while studies on the incidence of juvenile obesity, traffic-accident related injuries and suicides across Europe are more likely to be read and discussed by a wider public. Studies presenting epidemiological data on cancer or on congenital malformations will be eagerly received by the public and the media and will be widely discussed, often not in the way intended by the studies’ authors. These data strike a cord with everyone; they are, to use a term of Sigmund Freud’s ‘ich-nahe’, near to the self. Since its inception in 1979 the EUROCAT registry has produced a wealth of statistical information. EUROCAT is a European network of population-based registries for the epidemiological surveillance of congenital anomalies. It uses high-quality multiple source registries, documenting and ascertaining terminations of pregnancy as well as births. Through its regional networks EUROCAT covers 25% of births in Europe. The authors of the EUROCAT study in this issue of the Journal1, referred to as the ‘Garne–EUROCAT study’ here to avoid confusion with previously published EUROCAT studies, have chosen 11 severe congenital malformations, some incompatible with postnatal life (anencephalus, bilateral renal agenesis), some leading to serious physical and developmental handicap in infants if they survive postpartum surgery (encephalocele, spina bifida, hydrocephalus, hypoplastic left heart) and some that leave infants after surgery with a chance of growing up with a smaller degree of impediment from their congenital malformation (transposition of the great arteries, diaphragmatic hernia, omphalocele, gastroschisis and limb reduction defects). As classifications go, this one will hardly go unchallenged in any group of experts familiar with perinatal medicine and pediatric surgery, but it makes an excellent working tool. The Garne–EUROCAT study lends itself to very selective reading and interpretations; many readers will find their pre-existing opinions confirmed by parts of the study. One way of reading the Garne–EUROCAT study is to demand a 100% detection rate of fetal malformations followed by a 100% termination rate of affected fetuses and to start ranking the respective participating regions downwards from that. This is a morally deeply flawed way of calculation, but it will be performed. With the present cost-conscious atmosphere prevailing in clinical medicine, it is doubtful whether all physicians working in prenatal diagnosis will be able to resist the temptation of holding up a 100% detection–100% termination rate as an ideal benchmark. Prenatal diagnosis by ultrasound is increasing all over Europe. In some countries this is part of a structured, determined screening program, entitling every woman to one or two, sometimes three, ultrasound examinations specifically for the purpose of finding fetal malformations and providing the specific option to terminate the pregnancy should the malformation found on ultrasound be sufficiently severe. In other countries, ultrasound in pregnancy is left almost entirely to whatever forces of the free markets happened to position themselves in that niche by buying equipment and offering their services, whether for the detection of malformations or just for the fun of watching the fetus on ‘baby TV’. One of the most interesting findings of the Garne–EUROCAT study is that ultrasound, whether it is taking place in a private or a public healthcare setting, is improving, and fewer and fewer severe malformations come as a complete surprise during or shortly after birth. This is because both the quality of the ultrasound machines in offices, outpatient clinics and hospitals and also the operators’ skills are improving as more and more doctors and, in some countries, sonographers and midwives, acquire more than just basic ultrasound skills in their training and continue to use ultrasound in their daily practice. Furthermore, the increasing distribution of ultrasound documentation software and the better quality of documentation on paper and electronic media is certainly an important link between improved machine quality and improved operator skill. The question of abortion is one of the most divisive and fought over of Europe’s many political divides. Figures on how many abortions are performed per year are only available for a few countries. When, in the early 1970s, the Austrian parliament legalized abortion, the wily MPs scrapped a clause in the law that would have instituted the compulsory reporting of all abortions performed: every year when the abortion data for the past year were published they did not want to have a replay of the acrimonious rhetoric, the hand-wringing and the polemics that had surrounded the legalization of abortion. Politically this was a wise choice, but for public health statistics it was a disaster. Even in France, a country where reporting of abortions is compulsory, epidemiologists of the INSERM complained (in the daily Le Monde in October 2004) that abortion data collection is so