Regionalization of perinatal care: did we forget congenital anomalies?

Over recent decades, the development of ultrasound has yielded tremendous progress in the prenatal diagnosis of congenital anomalies. It is well established that prenatal diagnosis leading to pregnancy termination for severe congenital anomalies has contributed to a decrease in overall infant mortality at the population level1. At the same time, prenatal transfer to tertiary care centers has been encouraged for congenital anomalies requiring neonatal surgical treatment. A policy of regionalization aims to decrease perinatal mortality for selected anomalies, such as transposition of the great arteries2, or severe cardiac defects in general3. Another obvious advantage is avoiding postnatal transfer of newborns requiring neonatal surgery, with major benefits, such as improved bonding. While there is an abundance of literature demonstrating decreased neonatal morbidity and mortality for preterm and very low birth-weight (VLBW) neonates delivered at tertiary care facilities, few studies have focused on the impact of regionalization for neonates with congenital malformations requiring surgery. Even in the most recent population-based reports, neonates with congenital malformations are often excluded from analysis4. In a study conducted in Ohio from 1990 to 1995, a total of 60% of VLBW infants and only 36% of infants with major congenital malformations were born in a Level-III hospital5. The effect of regionalization of perinatal care on the neonatal outcome for major congenital anomalies merits further consideration. In this issue of the Journal, Pasquier et al.6 point out ethnic disparities in France in access to specialized perinatal care for newborns requiring neonatal surgery. Based on a French regional registry of congenital anomalies, the data suggest that women of non-Western European origin are less likely to deliver in a tertiary care center. This finding raises important concerns. In an ideal world, regionalization of perinatal care would result in adequate levels of delivery for all newborns, regardless of place of residence, or social or cultural context of their mothers. The reasons for the observed inequity in access to neonatal surgical care for foreign families might be related to several factors. Cultural or even language issues may play a role in the decision-making process regarding termination of pregnancy or referral to a tertiary care center for delivery. Place of residence is obviously associated with ethnic origin in many regions worldwide. However, this study suggests that the distance from the woman's residence to a regional center did not influence significantly the delivery in an inadequate center, while women of non-Western European origin were only half as likely to deliver in a center with facilities for neonatal surgery. Other factors, such as insurance status, may contribute to the barriers to successful regionalization. This is particularly true in the United States, where numerous studies observed a ‘deregionalization process’ in the early to mid-1990s in many states. The deregionalization of perinatal health care in the United States has been attributed in part to market forces, such as the growth of health maintenance organizations and other managed care organizations7-9. To explore the impact of managed care insurance status on the provision of highly specialized care, Erickson et al.10 examined the experience of children requiring surgical correction of congenital heart disease in California for the years 1992 to 1994. This study revealed that managed care status had an important effect on hospital use patterns among children undergoing heart surgery in California. Compared with children with indemnity insurance, those with managed care insurance were substantially less likely to undergo surgery at a center with a record of low mortality, after adjusting for: race/ethnicity, each of the procedure types and the distance to the nearest lower-mortality and higher-mortality hospital. Children with managed care insurance had a significantly higher mortality after cardiac surgery relative to children with indemnity insurance. Another study in the United States by Gonzalez et al.11 suggests that racial disparities in mortality for congenital heart surgery exist and cannot be explained biologically. Disparities in access are mediated only partly by insurance and are likely to occur through complex mechanisms that differ regionally, including cultural preferences and patterns. In most European countries, the issue of health insurance is less likely to play a key role in inequities between ethnic groups. We should therefore suspect other complex pitfalls in the organization of our prenatal networks, or even in the awareness of healthcare providers concerning the management of prenatally diagnosed anomalies. In the first years of perinatal regionalization, most countries would qualify hospitals as tertiary perinatal centers if they had neonatologists on the staff and possibilities of ventilatory support. Now, however, far more is required of a hospital to meet the highest standards of perinatal and neonatal care. The national guidelines of perinatal health care do not specify clearly the full range of expertise required for the management of complex malformations, and thus hospitals with limited perinatal services may still be recognized as tertiary or subspecialty centers. This may be particularly misleading for patients and possibly for physicians when it comes to neonatal surgery; in France, and likely in many other countries, a number of tertiary perinatal centers do not have the capacity for specialized neonatal surgery. While there has been important progress over the last 10 years in the regionalization of perinatal care for VLBW and preterm births12, 13, some regions may have been less successful in organizing satisfactorily the management of pregnancies with congenital malformations. From the perspective of healthcare policy, we believe that regionalization as a means to improve quality of care should not compromise accessibility of services and the availability of patient choice. The study by Pasquier et al.6 should prompt action concerning the organization of perinatal networks for the management of pregnancies with prenatally diagnosed anomalies, in particular in recognition of the current pitfalls in access to the much needed high-quality neonatal care for ethnic minorities. This could possibly save even more lives than has the spectacular progress of our prenatal technology.

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