Monitoring trends and inequities in neonatal mortality rates using national perinatal data collections

In this current issue of Paediatric and Perinatal Epidemiology, Wilhelm and colleagues1 examined neonatal mortality rates (NMR) in Malta over a 15-year period (2006–2020) compared to other European Union (EU) countries. They also investigated the contribution of congenital anomalies (CA) and maternal risk factors for NMR including nationality. Using population-based data from 64,000 births, they reported an NMR of 4.4/1000 live births, with no evidence of a time trend. Nearly 40% of deaths were related to CAs. The authors found that women from non-EU low-income countries were more than twice as likely to have an NMR than Maltese-born women. Finally, they reported Malta having higher NMRs both overall and CA-related than other EU countries, which was mainly attributed to the unavailability of termination of pregnancy for fetal anomalies (TOPFA) in Malta, unlike in most other EU countries. However, non-CA related NMRs were also higher than in the majority of EU countries, suggesting reductions may be possible. This paper highlights some important issues—(1) factors to consider in international comparisons of NMRs, (2) the preventability of CAs and (3) the excess burden of neonatal mortality among migrants from non-EU low-income countries. Firstly, as Wilhelm et al.1 noted, comparison of NMRs and, more broadly, perinatal mortality rates between countries are useful for many reasons. However, caution is required due to data differences because of legislation, reporting, and clinical practices.2 As well as variations in the availability of terminations of pregnancy among European countries, including for fetal anomalies, there are also variations in the upper gestational limits for terminations, for example, <22 weeks (e.g. Denmark), <24 weeks (e.g. Czech Republic) and no limit (e.g. France), so that what may be a TOPFA in one setting may be an early neonatal death in another.2 To further complicate matters, these may not always be distinguishable from spontaneous stillbirths.3 There are also differences in minimum gestational age for birth and fetal death registrations and in reporting signs of life at early gestations.2 It is informative to provide detailed tables accounting for differing criteria to facilitate international comparisons of perinatal mortality data and greater transparency. For example, in a paper examining the contribution of late terminations to stillbirth rates, Blondel et al. presented stillbirth rates with and without terminations for three gestational age thresholds (from 22, 24 and 28 weeks).3 Another example is the European Platform on Rare Disease Registration which publishes a summary table with the prevalence of TOPFA (total, <20 weeks, and 20 weeks or more), and perinatal mortality rates with and without TOPFA for each member registry.4 Secondly, while the majority of CAs cannot be prevented, the risk of neural tube defects (which include anencephaly, one of the main CA-related causes of death in the study by Wilhem et al.1) can be reduced by folic acid supplementation in the month prior to pregnancy and in the first trimester.5 However, less than 25% of European women follow this recommendation resulting in a significantly higher rate of neural tube defects than countries that have introduced mandatory folic acid fortification of flour.5 Some have labelled this as a public health failure and estimated that the adoption of fortification with 2.2 ug of folic acid per 100 g of flour or gluten free-equivalent products would prevent about a thousand pregnancies with neural tube defects each year.5 Finally, the most important issue raised by Wilhelm et al.1 is the challenge to reduce disparities in NMRs between migrants from low-income countries, in this case Somalia, Syria and Eritrea, and the receiving country population. Similarly, a meta-analysis reported that migrants (including refugees and asylum seekers) to high-income countries had a higher risk of poorer perinatal outcomes, notably feto-infant mortality (neonatal, infant and ‘spontaneous abortion’) in Asian, North and sub-Saharan African migrants and preterm birth in Asian, sub-Saharan African migrants than women from the receiving country.6 Over the last few decades, migration to Europe has increased rapidly, particularly since 2015,7 and Malta's location in the Mediterranean between mainland Europe and Africa, where many migrants originate makes it the first destination for many.8 As Wilhelm et al.1 noted, by 2022, a third of live births in Malta were to foreign-born mothers, the highest proportion seen among European countries. Malta has risen to the challenge of providing care for these women by setting up a Migrant Liaison Office as early as 2008, which plays a role in health education for migrants and assists in them accessing free health services and offering access to social workers.8 Despite this, 22% of Sub-Saharan African migrants had their first antenatal visit later than 24 weeks which is associated with poor perinatal outcomes,8 and only 4% of women from Africa and the Middle East took preconceptional folic acid.9 Providing appropriate and easy access to care for migrants, particularly refugees and asylum seekers is complex. Often, the women may have suffered traumatic experiences in their home countries or during the journey to the receiving country. In the receiving country, they can face language barriers, financial hardship, housing issues and legal status precarity as well as having limited health literacy. While they may have experienced ante-natal care and birthing in their home countries, this is likely to be very different to health care settings in a high-income country. A systematic review of services for asylum-seeking and refugee women in Europe published in 2021 assessed the impacts of perinatal social support classified into five themes: (1) Alleviation of being alone, (2) Safety and trust, (3) Practical knowledge and learning, (4) Being cared for and emotional support and (5) Increased confidence in and beyond the intervention.7 They reported that the interventions most valued by women and those with the most positive outcomes were community-based befriending/peer support/doula programs.7 Doulas are women who can provide support for a woman before, during and after the birth and come from within the same community as the woman.10 For example, in a Norwegian multicultural doula program, the doulas were bilingual in their native tongue and Norwegian, had given birth within the Norwegian system, and completed a course on topics such as maternity care and childbirth, thus felt they were able to build a cultural bridge to navigate the health system.10 It is not surprising that the most successful interventions involved community involvement as communities working with health services (co-production) is seen as essential to achieving the goals of the World Health Organisation's Global Strategy for Women's, Children's and Adolescents' Health.11 National population-based perinatal data collections are a powerful way to monitor the state of perinatal health including stillbirths and neonatal mortality. Not only can they contribute to international comparisons, albeit with caution, to highlight differences in outcomes, intra-country comparisons help monitor progress towards achieving greater equity in outcomes. The next step is to work with migrant communities to provide culturally appropriate care throughout a woman's reproductive life. HB was invited to provide the commentary. HDB and CB contributed equally to the conceptualisation of the article. HDB wrote the initial draft and both authors contributed to the final version of the manuscript. The authors have none to declare. The authors have no conflicting interests. Helen Bailey is an epidemiologist who completed a Master of Public Health and PhD at the University of Western Australia. She is a Senior Research Fellow in the Indigenous Health Research team in the Curtin Medical School at Curtin University, where she uses linked population health datasets to investigate factors associated with poor perinatal outcomes.Carol Bower is an epidemiologist and public health physician, who established the Western Australian Register of Developmental Anomalies and led it for over 30 years. Her research has involved the description, causes, effects and prevention of congenital anomalies, with a major focus on neural tube defects and Fetal Alcohol Spectrum Disorder. There are no data associated with the manuscript.