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ObjectiveThere is a paucity of data relating to neurodevelopmental outcomes in infants born late and moderately preterm (LMPT; 32+0–36+6 weeks). This paper present the results of a prospective, population-based study of 2-year outcomes following LMPT birth.Design1130 LMPT and 1255 term-born children were recruited at birth. At 2 years corrected age, parents completed a questionnaire to assess neurosensory (vision, hearing, motor) impairments and the Parent Report of Children's Abilities-Revised to identify cognitive impairment. Relative risks for adverse outcomes were adjusted for sex, socio-economic status and small for gestational age, and weighted to account for over-sampling of term-born multiples. Risk factors for cognitive impairment were explored using multivariable analyses.ResultsParents of 638 (57%) LMPT infants and 765 (62%) controls completed questionnaires. Among LMPT infants, 1.6% had neurosensory impairment compared with 0.3% of controls (RR 4.89, 95% CI 1.07 to 22.25). Cognitive impairments were the most common adverse outcome: LMPT 6.3%; controls 2.4% (RR 2.09, 95% CI 1.19 to 3.64). LMPT infants were at twice the risk for neurodevelopmental disability (RR 2.19, 95% CI 1.27 to 3.75). Independent risk factors for cognitive impairment in LMPT infants were male sex, socio-economic disadvantage, non-white ethnicity, preeclampsia and not receiving breast milk at discharge.ConclusionsCompared with term-born peers, LMPT infants are at double the risk for neurodevelopmental disability at 2 years of age, with the majority of impairments observed in the cognitive domain. Male sex, socio-economic disadvantage and preeclampsia are independent predictors of low cognitive scores following LMPT birth.

ObjectivesTo investigate inequalities in stillbirth rates by ethnicity to facilitate development of initiatives to target those at highest risk.DesignPopulation-based perinatal mortality surveillance linked to national birth and death registration (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK).SettingUK.Participants4 391 569 singleton births at ≥24+0 weeks gestation between 2014 and 2019.Main outcome measuresStillbirth rate difference per 1000 total births by ethnicity.ResultsAdjusted absolute differences in stillbirth rates were higher for babies of black African (3.83, 95% CI 3.35 to 4.32), black Caribbean (3.60, 95% CI 2.65 to 4.55) and Pakistani (2.99, 95% CI 2.58 to 3.40) ethnicities compared with white ethnicities. Higher proportions of babies of Bangladeshi (42%), black African (39%), other black (39%) and black Caribbean (37%) ethnicities were from most deprived areas, which were associated with an additional risk of 1.50 stillbirths per 1000 births (95% CI 1.32 to 1.67). Exploring primary cause of death, higher stillbirth rates due to congenital anomalies were observed in babies of Pakistani, Bangladeshi and black African ethnicities (range 0.63–1.05 per 1000 births) and more placental causes in black ethnicities (range 1.97 to 2.24 per 1000 births). For the whole population, over 40% of stillbirths were of unknown cause; however, this was particularly high for babies of other Asian (60%), Bangladeshi (58%) and Indian (52%) ethnicities.ConclusionsStillbirth rates declined in the UK, but substantial excess risk of stillbirth persists among babies of black and Asian ethnicities. The combined disadvantage for black, Pakistani and Bangladeshi ethnicities who are more likely to live in most deprived areas is associated with considerably higher rates. Key causes of death were congenital anomalies and placental causes. Improved strategies for investigation of stillbirth causes are needed to reduce unexplained deaths so that interventions can be targeted to reduce stillbirths.

International comparisons of stillbirth allow assessment of variations in clinical practice to reduce mortality. Currently, such comparisons include only stillbirths from 28 or more completed weeks of gestational age, which underestimates the true burden of stillbirth. With increased registration of early stillbirths in high-income countries, we assessed the reliability of including stillbirths before 28 completed weeks in such comparisons. In this population-based study, we used national cohort data from 19 European countries participating in the Euro-Peristat project on livebirths and stillbirths from 22 completed weeks of gestation in 2004, 2010, and 2015. We excluded countries without national data for stillbirths by gestational age in these periods, or where data available were not comparable between 2004 and 2015. We also excluded those countries with fewer than 10 000 births per year because the proportion of stillbirths at 22 weeks to less than 28 weeks of gestation is small. We calculated pooled stillbirth rates using a random-effects model and changes in rates between 2004 and 2015 using risk ratios (RR) by gestational age and country. Stillbirths at 22 weeks to less than 28 weeks of gestation accounted for 32% of all stillbirths in 2015. The pooled stillbirth rate at 24 weeks to less than 28 weeks declined from 0·97 to 0·70 per 1000 births from 2004 to 2015, a reduction of 25% (RR 0·75, 95% CI 0·65–0·85). The pooled stillbirth rate at 22 weeks to less than 24 weeks of gestation in 2015 was 0·53 per 1000 births and did not significantly changed over time (RR 0·97, 95% CI 0·80–1·16) although changes varied widely between countries (RRs 0·62–2·09). Wide variation in the percentage of all births occurring at 22 weeks to less than 24 weeks of gestation suggest international differences in ascertainment. Present definitions used for international comparisons exclude a third of stillbirths. International consistency of reporting stillbirths at 24 weeks to less than 28 weeks suggests these deaths should be included in routinely reported comparisons. This addition would have a major impact, acknowledging the burden of perinatal death to families, and making international assessments more informative for clinical practice and policy. Ascertainment of fetal deaths at 22 weeks to less than 24 weeks should be stabilised so that all stillbirths from 22 completed weeks of gestation onwards can be reliably compared. EU Union under the framework of the Health Programme and the Bridge Health Project.

ObjectiveTo explore international variations in the management and survival of extremely low gestational age and birthweight births.DesignArea-based prospective cohort of birthsSetting12 regions across Belgium, France, Italy, Portugal and the UKParticipants1449 live births and fetal deaths between 22+0 and 25+6 weeks gestation born in 2011–2012.Main outcome measuresPercentage of births; recorded live born; provided antenatal steroids or respiratory support; surviving to discharge (with/without severe morbidities).ResultsThe percentage of births recorded as live born was consistently low at 22 weeks and consistently high at 25 weeks but varied internationally at 23 weeks for those weighing 500 g and over (range 33%–70%) and at 24 weeks for those under 500 g (range 5%–71%). Antenatal steroids and provision of respiratory support at 22–24 weeks gestation varied between countries, but were consistently high for babies born at 25 weeks. Survival to discharge was universally poor at 22 weeks gestation (0%) and at any gestation with birth weight <500 g, irrespective of treatment provision. In contrast, births at 23 and 24 weeks weighing 500 g and over showed significant international variation in survival (23 weeks: range: 0%–25%; 24 weeks range: 21%–50%), reflecting levels of treatment provision.ConclusionsWide international variation exists in the management and survival of extremely preterm births at 22–24 weeks gestation. Universally poor outcomes for babies at 22 weeks and for those weighing under 500 g suggest little impact of intervention and support the inclusion of birth weight along with gestational age in ethical decision-making guidelines.

ObjectiveTo explore clinicians’ perspectives on supporting parents’ decision-making following diagnosis of a severe congenital anomaly, and how this is shaped by current policy.MethodsThis paper reports data collated as part of a larger project examining parents’ decision-making following antenatal diagnosis. The focus of this paper is the data arising from semistructured interviews conducted with 18 clinicians, with findings further supported by data generated from consultations between clinicians and parents. All interviews and consultations were audio-recorded and transcribed verbatim, with analysis based on the constant comparative approach.ResultsThree key themes emerged which together shape the practice of clinicians working in this area: first, the law governing termination of pregnancy (TOP) and how clinicians believe this influences the context in which decisions about whether to terminate or continue an affected pregnancy are made; second, approaches to the management of cases seen as particularly challenging; and third, how clinicians understand their role when working with parents. These themes combine to create a strong desire on the part of clinicians for parents to engage in a particular ‘rational’ form of decision-making and to be able to demonstrate the enactment of this. This is seen as important in order to ensure the ‘right’ decision has been reached and, particularly when the decision is to terminate, will withstand possible scrutiny.ConclusionsThe policy context in which these decisions are made strongly shapes how clinicians practise and what they want to see from the parents with whom they work. The ways in which they seek to overcome the difficulties in interpreting the law may result in variations in the offer of late TOP, both between and within units. This may inadvertently affect the options available to women least able to engage in this idealised form of decision-making.

IntroductionIn the UK, 1600 babies die every year before, during or immediately after birth at 20–28 weeks’ gestation. This bereavement has a similar impact on parental physical and psychological well-being to late stillbirth (>28 weeks’ gestation). Improved understanding of potentially modifiable risk factors for late stillbirth (including supine going-to-sleep position) has influenced international clinical practice. Information is now urgently required to similarly inform clinical practice and aid decision-making by expectant mothers/parents, addressing inequalities in pregnancy loss between 20 and 28 weeks.Methods and analysisThis study focuses on what portion of risk of pregnancy loss 20–28 weeks’ gestation is associated with exposures amenable to public health campaigns/antenatal care adaptation. A case–control study of non-anomalous singleton baby loss (via miscarriage, stillbirth or early neonatal death) 20+0 to 27+6 (n=316) and randomly selected control pregnancies (2:1 ratio; n=632) at group-matched gestations will be conducted. Data is collected via participant recall (researcher-administered questionnaire) and extraction from contemporaneous medical records. Unadjusted/confounder-adjusted ORs will be calculated. Exposures associated with early stillbirth at OR≥1.5 will be detectable (p<0.05, β>0.80) assuming exposure prevalence of 30%–60%.Ethics and disseminationNHS research ethical approval has been obtained from the London—Seasonal research ethics committee (23/LO/0622). The results will be presented at international conferences and published in peer-reviewed open-access journals. Information from this study will enable development of antenatal care and education for healthcare professionals and pregnant people to reduce risk of early stillbirth.Trial registration numberNCT06005272.

Objective To explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters. Design Qualitative semi‐structured interviews with 38 parents‐to‐be were collated and triangulated with data generated from consultation recordings. Analysis Data were analysed using a constant comparative‐based approach. Setting Recruitment was undertaken across four fetal medicine sites in two tertiary referral trusts. Participants Parents‐to‐be whose pregnancy was suspected or diagnosed as being affected by a severe congenital anomaly. This sample was purposive to include known factors affecting the decision to terminate or continue the affected pregnancy. Findings In trying to make a decision about how to proceed with their pregnancy, parents‐to‐be typically had to work hard to negotiate multiple uncertainties around the diagnosis and prognosis of the suspected anomaly. This was influenced by parents’ capacity to cope with uncertainty and the way in which uncertainty was managed by the clinical team. This negotiation of uncertainty was enacted within a fluid, nonlinear three‐phase process: “information seeking,” reflecting the way parents‐to‐be face the uncertainty associated with a fetal diagnosis and associated prognosis; “implications,” where consideration is given to future consequences of the decision; and “decision making,” which reflects the way in which the decision is made (head‐ or heart‐led). Spectrums of responses were apparent within each phase. Conclusions This study provides important insights into how parents‐to‐be make decisions following diagnosis or suspicion of a severe congenital anomaly. The impact of these on healthcare encounters is discussed, alongside recommendations for clinical practice.

Objective To investigate temporal trends in multiple birth rates and associated stillbirth and neonatal mortality by socioeconomic deprivation and maternal age in England. Design Population cohort study. Setting England. Participants All live births and stillbirths (1 January 1997 to 31 December 2008). Main outcome measures Multiple maternity rate, stillbirth and neonatal death rate by year of birth, decile of socioeconomic deprivation and maternal age. Results The overall rate of multiple maternities increased over time (+0.64% per annum 95% CI (0.47% to 0.81%)) with an increase in twin maternities (+0.85% per annum 95% CI (0.67% to 1.0%)) but a large decrease in triplet and higher order maternities (−8.32% per annum 95% CI (−9.39% to −7.25%)). Multiple maternities were significantly lower in the most deprived areas, and this was most evident in the older age groups. Women over 40 years of age from the most deprived areas had a 34% lower rate of multiple births compared with similar aged women from the most deprived areas (rate ratio (RR) 0.66 95% CI (0.61 to 0.73)). Multiple births remain at substantially higher risk of neonatal mortality (RR 6.30 95% CI (6.07 to 6.53)). However, for stillbirths, while twins remain at higher risk, this has decreased over time (1997–2000: RR 2.89 (2.69 to 3.10); 2005–2008: RR 2.22 95% CI (2.06 to 2.40)). Socioeconomic inequalities existed in mortality for singletons and multiple births. Conclusions This period has seen increasing rates of twin pregnancies and decreasing rates of higher order births which have coincided with changes in recommendations regarding assisted reproductive techniques. Socioeconomic differences in multiple births may reflect differential access to these treatments. Improved monitoring of multiple pregnancies is likely to have led to the reductions in stillbirths over this time.

ObjectiveTo describe neonatal outcomes and explore variation in delivery of care for infants born late (34–36  weeks) and moderately (32–33 weeks) preterm (LMPT).Design/settingProspective population-based study comprising births in four major maternity centres, one midwifery-led unit and at home between September 2009 and December 2010. Data were obtained from maternal and neonatal records.ParticipantsAll LMPT infants were eligible. A random sample of term-born infants (≥37 weeks) acted as controls.Outcome measuresNeonatal unit (NNU) admission, respiratory and nutritional support, neonatal morbidities, investigations, length of stay and postnatal ward care were measured. Differences between centres were explored.Results1146 (83%) LMPT and 1258 (79% of eligible) term-born infants were recruited. LMPT infants were significantly more likely to receive resuscitation at birth (17.5% vs 7.4%), respiratory (11.8% vs 0.9%) and nutritional support (3.5% vs 0.3%) and were less likely to be fed breast milk (64.2% vs 72.2%) than term infants. For all interventions and morbidities, a gradient of increasing risk with decreasing gestation was evident. Although 60% of late preterm infants were never admitted to a NNU, 83% required medical input on postnatal wards. Clinical management differed significantly between services.ConclusionsLMPT infants place high demands on specialist neonatal services. A substantial amount of previously unreported specialist input is provided in postnatal wards, beyond normal newborn care. Appropriate expertise and planning of early care are essential if such infants are managed away from specialised neonatal settings. Further research is required to clarify optimal and cost-effective postnatal management for LMPT babies.