Acta Pædiatrica ISSN 0803-5253
EDITORIAL DOI:10.1111/apa.12518
Interpreting regional differences in neonatal outcomes for extremely preterm babies Neonatal mortality rates are often used as a league table in international studies, assuming that lower rates are better. One of the key areas where this is probably not the case is in survival and outcomes for extremely preterm babies where other factors ensue to determine outcomes. The accompanying paper by Serenius and colleagues draws attention to differences in such outcomes among different regions in Sweden (1). The differences between outcome in two regions and most of the remainder are not significantly different after correction for confounders with the exception of deaths 22–24 weeks, and rates at 25–26 weeks are reasonably comparable across the country. Sweden is a country with more homogeneity in its population and healthcare facilities than many, and the data have been collected in a consistent manner, suggesting that these differences are real. At face value, these data are worrying but there are interesting variations in the use of caesarean section, intubation and surfactant, which may point to attitudinal differences at the lowest gestations, although these are not broken down by gestational week. Overall, the mortality reported in the EXPRESS study (2) is significantly lower at extremely low gestations compared to contemporary data from England (3) and many other countries, although neonatal morbidity remains similar (3,4), and probably more importantly, early childhood impairments show no significant differences using similar case definitions (Fig. 1) (5,6).
Indeed, the differences between Swedish regions seem to simply reflect early care, as differences disappeared when only deaths after 12 h of age were considered. In England, we did not see an improvement in mortality after 7 days between 1995 and 2006, and despite improved early mortality, there were no improvements in the frequency of major neonatal morbidities, such as brain injury or bronchopulmonary dysplasia (3). This is against a background where explicit decisions for no active intervention in 2006 were recorded for 70% of births at 22 weeks and 15% of births at 23 weeks. Recording this decision is critical if we are to understand differences between units, regions or countries, indeed without explicit information on an individual basis as to what was done and why over the whole birth population, particularly at 22 and 23 weeks of gestation, comparisons are almost meaningless. Does this mean that the lowest mortality regions are somehow better or more correct in their management or, as I believe, the clinicians take a different view of management? For many years, neonatologists and obstetricians have struggled with the concept of the best management strategy at extremely low gestations (often termed ‘borderline viability’) and in different regions or countries have taken very different stances. Bill Silverman prefaced a paper about this issue with the metaphor ‘is the glass half empty or half full, it depends whether you are drinking or pouring’ (7). This neatly encapsulates the dilemma Lagercrantz termed the ‘hard problem’ (8), and should make us all question our
Figure 1 Comparison of outcomes at 2.5–3 years between births in England in 2006 (EPICure2) (5) and Sweden in 2004–2007 (EXPRESS) (6); EPICure2 data have been recoded to same Bayley 3 normative data as EXPRESS before classification in standard deviation bands.
4
ª2013 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2014 103, pp. 4–5
Editorial
Editorial
interpretation of statistics and, indeed, whether statistics can assist us at all in making decisions about life or death in the early minutes of a child’s life. Often, the problem is approached from an ethical perspective citing the high rate of impairment and disability among survivors as reasons for not intervening, and asking parents to help in the decisions that are made; these debates often focus on the concept of the ‘best interests’ of the child (9). However, this produces no consensus as to how to approach such pregnancies, as personal priors or ethical views vary widely, and it is moot as to whether parents are competent to make rapid decisions under the stress of the unknown, during labour, and often after very directive counselling. Some countries have approached this issue through guidance (10) or consensus (11), but across Europe, there remain major differences in approach. In a recent survey carried out by the European Critical Care Foundation, 50% of national societies declared that babies born below 24 weeks of gestation were not offered active intervention after birth (Gallagher K, unpublished data). Even among countries declaring intervention, most do not offer active care at below 23 weeks and are circumspect at offering caesarean section at 23 or 24 weeks of gestation for foetal indications, citing the need to do a classical section and the risk to the woman in later pregnancies, when outcomes following caesarean section at best may reflect limited success. Against this background, the interventional approach at very low gestations – 22–23 weeks – is not the norm, but neither is it associated with improved neonatal morbidity. There is no doubt that as medical care has progressed, outcome for extremely low gestational age babies has improved. The number of survivors is increasing, but neonatal morbidity remains high. In the early days of neonatal intensive care, cerebral palsy rates declined somewhat after mortality rates had decreased (12). Reviewing the data in the figure, neurodevelopmental risks have shifted at 24 and 25 weeks, compared to 50% risk of moderate or severe impairment in EPICure data from 1995, but outcome
EDITORIAL DOI:10.1111/apa.12518
Interpreting regional differences in neonatal outcomes for extremely preterm babies Neonatal mortality rates are often used as a league table in international studies, assuming that lower rates are better. One of the key areas where this is probably not the case is in survival and outcomes for extremely preterm babies where other factors ensue to determine outcomes. The accompanying paper by Serenius and colleagues draws attention to differences in such outcomes among different regions in Sweden (1). The differences between outcome in two regions and most of the remainder are not significantly different after correction for confounders with the exception of deaths 22–24 weeks, and rates at 25–26 weeks are reasonably comparable across the country. Sweden is a country with more homogeneity in its population and healthcare facilities than many, and the data have been collected in a consistent manner, suggesting that these differences are real. At face value, these data are worrying but there are interesting variations in the use of caesarean section, intubation and surfactant, which may point to attitudinal differences at the lowest gestations, although these are not broken down by gestational week. Overall, the mortality reported in the EXPRESS study (2) is significantly lower at extremely low gestations compared to contemporary data from England (3) and many other countries, although neonatal morbidity remains similar (3,4), and probably more importantly, early childhood impairments show no significant differences using similar case definitions (Fig. 1) (5,6).
Indeed, the differences between Swedish regions seem to simply reflect early care, as differences disappeared when only deaths after 12 h of age were considered. In England, we did not see an improvement in mortality after 7 days between 1995 and 2006, and despite improved early mortality, there were no improvements in the frequency of major neonatal morbidities, such as brain injury or bronchopulmonary dysplasia (3). This is against a background where explicit decisions for no active intervention in 2006 were recorded for 70% of births at 22 weeks and 15% of births at 23 weeks. Recording this decision is critical if we are to understand differences between units, regions or countries, indeed without explicit information on an individual basis as to what was done and why over the whole birth population, particularly at 22 and 23 weeks of gestation, comparisons are almost meaningless. Does this mean that the lowest mortality regions are somehow better or more correct in their management or, as I believe, the clinicians take a different view of management? For many years, neonatologists and obstetricians have struggled with the concept of the best management strategy at extremely low gestations (often termed ‘borderline viability’) and in different regions or countries have taken very different stances. Bill Silverman prefaced a paper about this issue with the metaphor ‘is the glass half empty or half full, it depends whether you are drinking or pouring’ (7). This neatly encapsulates the dilemma Lagercrantz termed the ‘hard problem’ (8), and should make us all question our
Figure 1 Comparison of outcomes at 2.5–3 years between births in England in 2006 (EPICure2) (5) and Sweden in 2004–2007 (EXPRESS) (6); EPICure2 data have been recoded to same Bayley 3 normative data as EXPRESS before classification in standard deviation bands.
4
ª2013 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2014 103, pp. 4–5
Editorial
Editorial
interpretation of statistics and, indeed, whether statistics can assist us at all in making decisions about life or death in the early minutes of a child’s life. Often, the problem is approached from an ethical perspective citing the high rate of impairment and disability among survivors as reasons for not intervening, and asking parents to help in the decisions that are made; these debates often focus on the concept of the ‘best interests’ of the child (9). However, this produces no consensus as to how to approach such pregnancies, as personal priors or ethical views vary widely, and it is moot as to whether parents are competent to make rapid decisions under the stress of the unknown, during labour, and often after very directive counselling. Some countries have approached this issue through guidance (10) or consensus (11), but across Europe, there remain major differences in approach. In a recent survey carried out by the European Critical Care Foundation, 50% of national societies declared that babies born below 24 weeks of gestation were not offered active intervention after birth (Gallagher K, unpublished data). Even among countries declaring intervention, most do not offer active care at below 23 weeks and are circumspect at offering caesarean section at 23 or 24 weeks of gestation for foetal indications, citing the need to do a classical section and the risk to the woman in later pregnancies, when outcomes following caesarean section at best may reflect limited success. Against this background, the interventional approach at very low gestations – 22–23 weeks – is not the norm, but neither is it associated with improved neonatal morbidity. There is no doubt that as medical care has progressed, outcome for extremely low gestational age babies has improved. The number of survivors is increasing, but neonatal morbidity remains high. In the early days of neonatal intensive care, cerebral palsy rates declined somewhat after mortality rates had decreased (12). Reviewing the data in the figure, neurodevelopmental risks have shifted at 24 and 25 weeks, compared to 50% risk of moderate or severe impairment in EPICure data from 1995, but outcome
