Background Since 2015, the National Institute for Health and Care Excellence (NICE) guidelines have recommended antenatal magnesium sulfate (MgSO 4 ) for mothers in preterm labour (<30 weeks’ gestation) to reduce the risk of cerebral palsy (CP) in the preterm baby. However, the implementation of this guideline in clinical practice was slow, and MgSO 4 use varied between maternity units. In 2018, the PRrevention of Cerebral palsy in PreTerm labour (PReCePT) programme, an evidence-based quality improvement (QI) intervention to improve use of MgSO 4 , was rolled out across England. Earlier evaluation found this programme to be effective and cost-effective over the first 12 months. We extended the original evaluation to determine the programme’s longer-term impact over 4 years, its impact in later preterm births, the impact of the COVID-19 pandemic, and to compare MgSO 4 use in England (where PReCePT was implemented) to Scotland and Wales (where it was not). Methods Quasi-experimental longitudinal study using data from the National Neonatal Research Database on babies born <30 weeks’ gestation and admitted to a National Health Service neonatal unit. Primary outcome was the percentage of eligible mothers receiving MgSO 4 , aggregated to the national level. Impact of PReCePT on MgSO 4 use was estimated using multivariable linear regression. The net monetary benefit (NMB) of the programme was estimated. Results MgSO 4 administration rose from 65.8% in 2017 to 85.5% in 2022 in England. PReCePT was associated with a 5.8 percentage points improvement in uptake (95% CI 2.69 to 8.86, p<0.001). Improvement was greater when including older preterm births (<34 weeks’ gestation, 8.67 percentage points, 95% CI 6.38 to 10.96, p<0.001). Most gains occurred in the first 2 years following implementation. PReCePT had a NMB of £597 000 with 89% probability of being cost-effective. Following implementation, English uptake appeared to accelerate compared with Scotland and Wales. There was some decline in use coinciding with the onset of the pandemic. Conclusions The PReCePT QI programme cost-effectively improved use of antenatal MgSO 4 , with anticipated benefits to the babies who have been protected from CP.
Suicide is a leading cause of mortality in young people globally. A history of prior self-harm, with or without suicidal intent, is associated with increased risks of future suicide attempts (SAs) or suicides. While non-suicidal self-injury (NSSI) is likely a predictor of SA, its particular association to suicide deaths remains unexplored. This is a population-based case-control study in England. Cases were all individuals who died by suicide before their 18th birthday (n = 240), between April 2019 and March 2021. Controls (n = 240) were age- and sex-matched individuals who died from other unexpected causes. Conditional logistic regression was used to estimate odds ratios for self-harm history and other risk factors, adjusting for ethnicity and socioeconomic deprivation. A fully adjusted multivariable model was formed to estimate associations between each risk factor and suicide death, adjusting for all measured factors. A history of NSSI was strongly associated with subsequent suicide death (partially adjusted OR, 27.8; 95
Objectives To identify (a) Sociodemographic differences in treatment with antenatal magnesium sulphate (MgSO4) for fetal neuroprotection in preterm birth and (b) Whether any sociodemographic differences have reduced over time, in conjunction with implementation of a national quality improvement (QI) programme to improve use of MgSO4.Design Retrospective cohort study using routinely collected data.Setting NHS England maternity units from 2014 to 2024.Participants Mothers with a preterm baby born from 24 to under 30 weeks’ gestation and admitted to an NHS neonatal unit.Outcomes Receipt of antenatal MgSO4.Results Before implementation of the National PReCePT (Preventing Cerebral Palsy in Pre-Term Labour) Programme (NPP) in 2018, mothers from the North of England had lower odds of MgSO4 treatment than mothers from the South of England (OR 0.60, 95% CI 0.49 to 0.74). Following implementation of the NPP, there was no longer evidence for regional differences in treatment (OR 0.87, 95% CI 0.70 to 1.08). Pre-NPP, mothers from more deprived areas had lower odds of treatment than women from more affluent areas (OR 0.87, 95% CI 0.80 to 0.95), but again, post-NPP, there was no longer evidence for difference in use by deprivation status (OR 1.02, 95% CI 0.92 to 1.14, p value for interaction=0.022). White British mothers may have had slightly lower odds of treatment than mothers of other ethnic groups (OR 0.93, 95% CI 0.87 to 1.00), and this potential difference did not appear to change from pre to post-NPP (p value for interaction=0.235). There was little evidence that maternal age affected the odds of treatment.Conclusions Previous sociodemographic differences in receipt of antenatal MgSO4 treatment for preterm birth appear to have equalised in England. This follows, and could be due in part to England’s universal implementation of the National PReCePT QI programme.
Background: Effective and cost-effective treatments are not always optimally implemented. The benefit forgone due to sub-optimal implementation is often not considered or estimated. We use the economic concept of ‘incremental net monetary benefit’ (INMB) to demonstrate how this can be valued. This approach can inform decision-making when used to estimate the value for money of potential future quality improvement (QI) programmes. We illustrate these analyses using the case of antenatal magnesium sulphate (MgSO4), a cost-effective treatment for the prevention of cerebral palsy in preterm births. We estimate the optimal implementation of MgSO4, the INMB lost due to sub-optimal implementation, and the value of future implementation initiatives to increase the use of MgSO4. Methods: We estimated MgSO4 treatment implementation for babies under 32 weeks’ gestation using routine data on its uptake between 2014 and 2022 in England, Scotland, and Wales. The optimal uptake level of MgSO4 was estimated using clinical judgment. The societal lifetime INMB of MgSO4 for the prevention of cerebral palsy in preterm births was obtained from the literature. The INMB of sub-optimal implementation over time was estimated as the difference between optimal and actual uptake over time in each country. We estimated the cost-effectiveness of a hypothetical future QI programme based on different scenarios of implementation effectiveness and costs. Results: The optimal uptake of MgSO4 was 95%. The INMB forgone associated with sub-optimal MgSO4 uptake has reduced over time, as uptake has increased. However, in 2022, the societal lifetime INMB forgone was still £18.2m in England, £3.7m in Scotland, and £1.0m in Wales. A future QI programme across all three countries achieving a 5% increase in MgSO4 uptake over one year, and costing £987,500 to implement, would be cost-effective; generating £7.5m in INMB. Future implementation initiatives are likely to be cost-effective within a range of different implementation effectiveness and costs. Conclusions: The case of MgSO4 treatment for preterm birth illustrates how sub-optimal implementation of evidence-based interventions can be associated with high opportunity costs measured as INMB forgone. This approach provides valuable quantification of the value for money of future QI programmes to improve the implementation of these interventions.
IntroductionSuicide in young people has risen in many countries over the last 10 years.AimThe aim of this study was to report any changes, and characteristics of children dying by suicide in England, before, and during the COVID pandemic.MethodsChild deaths from suicide, occurring between 1st April 2019 and 31st March 2023 were linked to demographic, death-review and Hospital Episodes Statistics (HES) data; used to identify mental health disorders and self-harm events. Using Case-Cross Over methodology, we investigated the relative risk of suicide, after recent HES-coded events.ResultsIn total there were 498 deaths likely due to suicide, during the 4 year period. Risk of death by suicide was 14.31 (13.08–15.63) per 1,000,000 CYP per year, with little evidence that risk (p = 0.863) or method (p = 0.199) changed over the period. The relationship between deprivation and suicide risk was different by race/ethnicity (both p < 0.001), with decreasing deprivation associated with increasing risk of suicide in white children [IRR 1.12 (1.03–1.21)], and decreasing risk in Asian [IRR 0.52 (0.41–0.65)], Black [IRR 0.31 (0.21–0.44)] and Mixed/Other ethnicity (IRR 0.73 (0.60–0.89) children. Only a recorded diagnosis of self-harm was more common before the death than in the preceding control periods [OR 8.99 (4.27–18.94)].ConclusionIn England, suicide rates do not appear to be increasing, and the methods of suicide remain static. The role of deprivation and suicide risk appears to be different between race/ethnicity, while a recorded diagnosis of a self-harm events appears to predict suicide in the subsequent month.
Introduction In Great Britain, an estimated 4% of road deaths occur among children under 16 years-old. Previous research has often focused on individual-level risk factors, with less attention to the broader social, environmental and system-level determinants shaping child road safety. Emerging systematic reviews highlight the need for integrated approaches that consider inequalities, built environment characteristics and transport systems in understanding child injury risk. The establishment of the National Child Mortality Database (NCMD) in 2019 provides a unique opportunity to comprehensively analyse child road fatalities in England. This study adopts a systems-based approach, using Dahlgren and Whitehead’s (1991) Social Determinants of Health model to explore the interplay of modifiable risk factors and inform evidence-based interventions.Methods and analysis A sequential mixed-methods design will analyse all child road traffic fatalities (0–17 years) recorded in the NCMD between 2019 and 2024 (estimated n ≈ 262). Cases will be identified using NCMD cause of death classifications and child death review panel determinations.Quantitative analysis will describe patterns in child road deaths across individual, family, social and environmental factors, identifying variations by mode of transport, age, gender, deprivation and geographic region. A qualitative template analysis of child death review narratives will provide deeper insight into the systemic conditions contributing to child road deaths. Context-Mechanism-Outcome models will be developed to explore how different risk factors interact to increase vulnerability. Recommendations for policy and practice will be coproduced with stakeholders, including caregivers, using the study findings.Ethics and dissemination Ethics approval has been obtained through the University College London, Civil, Environmental and Geomatic Engineering Local Ethics Board (28815/001). Findings will be disseminated through peer-reviewed publications, policy briefings, stakeholder workshops and practitioner guidance, with the aim of informing national road safety policy and cross-sector prevention strategies.
BACKGROUND:Knife-related deaths in children present a serious public health challenge. This study reports the demographics and preinjury, injury and postinjury factors associated with death in children and young people (CYP), under the age of 18 years, who died of knife wounds in England between 2019 and 2024. METHODS:A retrospective cohort review of the English National Child Mortality Database between April 2019 and March 2024. Rates of death were corrected for population size using the 2021 census. Preinjury, injury and postinjury factors associated with death are reported descriptively. RESULTS:145 CYP died of knife wounds. The mean age was 14.4 years (SD 4.2) and 90.3% (n=131) were male. The rates of death per 100 000 CYP, per year were highest in children of 'Black/Black British' ethnicity (1.40 (95% CI 1.03 to 1.86)), with an incidence rate ratio (IRR) of 13.29 (95% CI 8.23 to 20.00), compared with CYP of 'White' ethnicity. Children living in the most deprived areas, had a greater than seven times higher risk of death (IRR 7.48 (95% CI 3.22 to 17.29), compared to CYP living in the least deprived areas. Of the 57 cases available for detailed analysis, injuries to the chest and neck were responsible for the fatal injuries in 75.9% of cases (n=44) and 60.3% (n=35) died before reaching hospital. A thoracotomy was performed in 56.9% (n=33) of cases. Prior to death, 75.4% (n=43) had been known to social services and 57.9% (n=33) had experienced domestic violence and abuse. Neurodiversity or mental health concerns were reported in 50.9% (n=29) of CYP. CONCLUSIONS:Death of CYP secondary to knife wounds occurred in all regions of England. Many children are exposed to adverse childhood experiences before death and known to statutory services. The identification of interventions to decrease the risk to children from knife violence remains a priority.
OBJECTIVE:To generate the evidence base, using national cohort data, to design a clinical trial evaluating whether cesarean section (CS) or vaginal birth (VB) offers better outcomes for very preterm infants. BACKGROUND:Severe intraventricular hemorrhage (IVH) remains a major cause of death and brain injury amongst very preterm infants. Observational studies have suggested CS may reduce the risk, but it is not known which infants might benefit and whether a randomized trial, to generate robust evidence to guide clinical decisions, would be feasible. METHODS:We examined births in England and Wales between 22 + 0 and 31 + 6 weeks' gestation (2012-2022; n = 74,423) and identified the infants that could take part in a trial. Three emulated target trials (ETTs) were constructed examining intended mode of birth (iVB vs iCS), across different populations, with confounding controlled by inverse probability weighting. RESULTS:One in four(25.2%) very preterm infants could be considered for participation in a future trial. Infants born by CS had lower rates of severe IVH or death than those born by VB (4,319 (9.6%) vs 5,542 (18.7%)) (p < 0.001), although in the adjusted analyses using intended mode of birth the difference did not persist (e.g. ETT#1: 13.3% vs 13.0%, p = 0.609); except for non‑cephalic (breech) infants. Infants in a non-cephalic presentation in the iCS group had a significantly lower chance of death or sIVH in all three emulated trials (ETT#1, OR 0.73 (0.64-0.83); ETT#2, OR 0.65 (0.56-0.76); ETT#3, OR 0.81 (0.70-0.94). CONCLUSIONS:Only a minority of very preterm births are realistically randomisable in a future trial, particularly babies in breech presentation who may benefit from a CS. An international multi-centre trial is needed to examine this question.
AIM:We evaluated the impact of 'CoolCuddle', parental cuddling during therapeutic hypothermia intervention for hypoxic-ischaemic encephalopathy, on heart rate variability (HRV). METHODS:In this prospective, single-group, interventional study with repeated measures, we included infants ≥ 36 weeks' gestation undergoing hypothermia and CoolCuddle with HRV data. Time-domain HRV was assessed before, during, and after each cuddle. Primary outcomes were heart rate, mean RR interval (ANN), standard deviation of normal RR intervals, and root mean square of successive differences (RMSSD). RESULTS:In 65 CoolCuddles from 26 infants, CoolCuddle did not significantly alter HRV. However, infants with a 1-min Apgar < 7 had increased heart rates during (+2.33 bpm) and after (+3.27 bpm) cuddling, whereas those with higher Apgar scores showed decreases (-1.43 and -8.21 bpm) compared with pre-cuddle. Infants with Apgar < 7 or abnormal aEEG had reduced ANN during (-11.96 ms, -12.75 ms) and after (-19.89 ms, -19.00 ms), while those with higher Apgar or normal aEEG showed increases (+15.32 ms, +23.33 ms(during-cuddle); +63.94 ms, +55.06 ms (post-cuddle)). Maternal cuddling was associated with higher post-cuddle RMSSD (+1.06 ms) than paternal cuddling (-0.73 ms), (p = 0.04). CONCLUSION:While CoolCuddle had little overall effect on HRV, autonomic responses varied by asphyxia and encephalopathy severity and parent, suggesting differential modulation in vulnerable infants.
Antenatal magnesium sulfate (MgSO4) and antenatal steroids (ANS) are evidence-based interventions that reduce risk of cerebral palsy and respiratory complications in preterm babies. They are recommended in clinical guidelines internationally. However, we have limited information on how well they are being implemented. The present study is a secondary data analysis and review using routine neonatal data on babies born 24-32 weeks' gestation, from hospitals in the international Vermont Oxford Network (VON) dataset. It is supplemented with UK National Neonatal Research Database data, and a literature review. We describe international use of antenatal MgSO4 and ANS, with focus on differences between high (HIC) versus middle-income (MIC) countries. VON data from 2024 on 45 619 infants across 1111 centers from the UK, Ireland, Austria, Switzerland, Italy, US, UAE, Brazil, South Africa, and India were included. Ireland and the UK had the highest rates of MgSO4 administration (>80%); South Africa and the UAE had the lowest (33.6%, 44.5%). There was a significant difference by income status (mean 74.8% in HICs vs. 49.4% in MICs). This disparity does not appear to have reduced over time. ANS were used more, with less variation. The supplementary literature review (10 studies reporting on 288 631 infants) found comparable treatment rates to those reported in VON. Use of antenatal MgSO4 and ANS varies considerably across countries. Uptake is significantly lower in these MICs, but variation is high even between these HICs. Further work should prioritize understanding why differences exist, and what can be done to make these key antenatal interventions more globally equitable.
Background During the COVID-19 pandemic children and young people (CYP) mortality in England reduced to the lowest on record, but it is unclear if the mechanisms which facilitated a reduction in mortality had a longer lasting impact, and what impact the pandemic, and its social restrictions, have had on deaths with longer latencies (e.g., malignancies). The aim of this analysis was to quantify the relative rate, and causes, of childhood deaths in England, before, during, and after national lockdowns for COVID-19 and its social changes. Methods and findings Deaths of all children (occurring before their 18th birthday) occurring from April 2019 until March 2023 in England were identified. Data were collated by the National Child Mortality Database. Study population size and the underlying population profile was derived from 2021 Office of National Statistics census data Mortality for each analysis year was calculated per 1,000,000 person years. Poisson regression was used to test for an overall trend across the time period and tested if trends differed between April 2019 to March 2021 (Period 1)) and April 2021 to March 2023 (Period 2: after lockdown restrictions). This was then repeated for each category of death and demographic group. Twelve thousand eight hundred twenty-eight deaths were included in the analysis. Around 59.4% of deaths occurred under 1 year of age, 57.0% were male, and 63.9% were of white ethnicity. Mortality rate (per 1,000,000 CYP per year) dropped from 274.2 (95% CI 264.8-283.8) in 2019-2020, to 242.2 (95% CI 233.4-251.2) in 2020-2021, increasing to 296.1 (95% CI 286.3-306.1) in 2022-2023. Overall, death rate reduced across Period 1 (Incidence rate ratio (IRR) 0.96 (95% CI 0.92-0.99)) and then increased across Period 2 (IRR 1.12 (95% CI 1.08-1.16)), and this pattern was also seen for death by Infection and Underlying Disease. In contrast, rate of death after Intrapartum events increased across the first period, followed by a decrease in rate in the second (Period 1 IRR 1.15 (95% CI 1.00-1.34)) versus Period 2 (IRR 0.78 (95% CI 0.68-0.91), p(difference) = 0.004). Rates of death from preterm birth, trauma and sudden unexpected deaths in infancy and childhood (SUDIC), increased across the entire 4-year-study period (preterm birth, IRR 1.03 (95% CI 1.00-1.07); trauma IRR 1.12 (95% CI 1.06-1.20); SUDIC IRR 1.09 (95% CI 1.04-1.13)), and there was no change in the rate of death from Malignancy (IRR 1.01 (95% CI 0.95-1.06)). Repeating the analysis, split by child characteristics, suggested that mortality initially dropped and subsequently rose for children between 1 and 4 years old (Period 1 RR 0.85 (95% CI 0.76-0.94) versus Period 2 IRR 1.31 (95% CI 1.19-1.43), p(difference) < 0.001. For Asian, black and Other ethnic groups, we observed increased rates of deaths in the period 2021-2023, and a significant change in trajectory of death rates between Periods 1 and 2 (Asian (Period 1 IRR 0.93 (95% CI 0.86-1.01) versus Period 2 IRR 1.28 (95% CI 1.18-1.38), p(difference) < 0.001); black (Period 1 IRR 0.97 (95% CI 0.85-1.10) versus Period 2 IRR 1.27 (95% CI 1.14-1.42), p(difference) = 0.012); Other (Period 1 IRR 0.84 (95% CI 0.68-1.04) versus Period 2 IRR 1.45 (95% CI 1.20-1.75), p(difference) = 0.003). Similar results were observed in CYP in the most deprived areas (Period 1 IRR 0.95 (95% CI 0.89-1.01) versus Period 2 IRR 1.18 (95% CI 1.12-1.25), p(difference) < 0.001). There was no change in the trajectory of death rates for children from white (p = 0.601) or mixed (p = 0. 823) ethnic backgrounds, or those in the least deprived areas (p = 0.832), between Periods 1 and 2; with evidence of a rise across the whole study period for children from white backgrounds (IRR 1.05 (95% CI 1.03-1.07), p < 0.001) and those in the least deprived areas (IRR 1.06 (95% CI 1.01-1.10), p < 0.001). Limitations include that the population at risk was estimated at a mid-point of the study, and changes may have biased our estimates. In particular, absolute rates should be interpreted with caution. In addition, child death in England is rare, which may further limit interpretation; particularly in the stratified analyses. Conclusions In this study, overall child mortality in England after the national lockdowns was higher than before them. We observed different temporal profiles across the different causes of death, with reassuring trends in deaths from Intrapartum deaths after lockdowns were lifted. However, for all other causes of death, rates are either static, or increasing. In addition, the relative rate of dying for children from non-white backgrounds, compared to white children, is now higher than before or during the lockdowns.
This protocol describes the rationale, plan, and methodology for a study investigating sociodemographic inequities in use of antenatal magnesium sulphate (MgSO4) in England, for neuroprotection of the preterm infant. It is a secondary data analysis study using routinely collected healthcare data from the National Neonatal Research Database. The focus of our analysis is to identify whether any inequities in treatment changed from before to after implementation of PReCePT , a national Quality Improvement programme to increase antenatal MgSO4 use in England. This work is motivated by, and in the context of, wider evidence of persistent inequities in maternal and perinatal care in England, and evidence that QI programmes, even those that successfully improve overall levels of care, do not necessarily address – any may even worsen – inequities in care.
Introduction Neonatal death exerts long-lasting impact on parents’ mental health, finances and relationships, and the wider family. There is national and international momentum to evaluate interventions to support parents after the death of a baby. Core Outcome Sets (COSs) provide a minimum set of outcomes, agreed by stakeholders to be important, which should be evaluated in all studies to support evidence syntheses and identification of the most effective interventions. We aim to develop a COS for assessing interventions and care after neonatal death in high-income countries, to support future evidence syntheses and enable the identification of effective interventions and care for parents.Methods and analysis We will develop the COS in six phases. A parent involvement group and stakeholder steering committee have been established and have informed each planned phase: (1) systematic review of quantitative studies evaluating care and interventions provided after neonatal death, to describe interventions, outcomes and outcome measurement tools used to assess intervention effectiveness; (2) qualitative interviews with parents who have experienced neonatal death to identify outcomes important and relevant to them; (3) think-aloud interviews with stakeholders (bereaved parents, healthcare professionals and other stakeholders) to develop and refine an online survey; (4) real-time online international Delphi survey with bereaved parents, healthcare professionals and other stakeholders to shortlist outcomes for consideration in the COS; (5) adapted nominal group online consensus meetings with parents, healthcare professionals and other stakeholders to agree final COS and (6) identification of a preliminary set of measurement tools.Ethics and dissemination Ethical approval has been granted for all activities to be undertaken by the University of Bristol Health Sciences Faculty Research Ethics Committee (reference: 15121). We will disseminate the findings via peer-reviewed publications and relevant academic and professional conferences.PROSPERO registration number CRD42020151365.
CoolCuddle, enabling parents to cuddle their babies with neonatal encephalopathy (NE) during therapeutic hypothermia and intensive care (TH), was developed in research settings. To determine the impact of implementing CoolCuddle in usual care in six diverse neonatal intensive care units on the cooling process and intensive care. This vital sign cohort study embedded within the CoolCuddle implementation study enrolled 36 infants receiving TH for NE. Nurses received training on CoolCuddle and a standard operating procedure using an instruction video. After consenting, parents experienced up to 2 h of CoolCuddle with 30 min of pre- and post-cuddle observation. We used multilevel, clustered linear modelling to assess the physiological stability in temperature, cardio-respiratory and neurophysiology across the CoolCuddle. In 60 CoolCuddles over 93.12 h, respiratory parameters, heart rate or neurological function did not vary between the epochs ( p > 0.05). During cuddle, sleep–wake cycling on amplitude-integrated EEG increased ( p = 0.008) and there was weak evidence of lower pain scores ( p = 0.08). No adverse effects were observed. Implementing CoolCuddle with support in usual practice maintained physiological stability and did not significantly affect the cooling process or intensive care, and may improve infant comfort. Ongoing monitoring of adverse effects when implementing CoolCuddle is recommended.
Objective The aim of this analysis was to describe the epidemiology, demographics and characteristics of children and young people (CYP) who died of SARS-CoV-2 infection in England during the first 2 years of the pandemic.Design The cohort investigated in this study is all CYP, born alive at, or after, 22 weeks of gestation, who died before their 18th birthday between 1 February 2020 and 31 March 2022 in England. All cases were reviewed to identify if SARS-CoV-2 probably, or possibly, contributed to death. Mortality rates were calculated, assuming a Poisson distribution, for the whole population, and split by demographics and patient characteristics.Setting England.Participants 6389 CYP deaths in England reported to the National Child Mortality Database (NCMD).Main outcome Risk of death.Results 88 of the 6389 deaths of CYP were identified as deaths probably due to COVID-19. Thus, COVID-19 was responsible for 1.4% of all deaths of CYP in this 26-month period. Overall mortality rate due to COVID-19 in CYP was 3.59 (2.88–4.42) per 1 000 000 person years, being highest in the youngest (< 5 years; 4.68 (3.16–6.68)) and oldest (16/17 years; 4.83 (2.57–8.26)) CYP. Asian and Black CYP had higher mortality than those from white backgrounds (p<0.001), and mortality rate increased with increasing deprivation. The majority (61/77, 79.2) of CYP who died of COVID had a documented life limiting condition.Conclusions Mortality rates were highest in less than 5 years old. Despite social changes, and shielding of vulnerable CYP, children with life-limiting (but not necessarily life-threatening) conditions, appeared to have the highest mortality rates, similar to that seen in adults with comparable underlying conditions. The risk of death in more deprived neighbourhoods and in those from Asian and Black ethnic backgrounds was increased, and this was not explained by their other demographic characteristics.
BACKGROUND:We investigated the association and individual changes in cognitive scores between late infancy and early school age in children cooled for neonatal encephalopathy secondary to perinatal asphyxia (NE) who did not develop cerebral palsy. METHODS:We included 50 children born ≥35 weeks gestation cooled for NE who did not develop cerebral palsy. We assessed cognition using an average of cognitive and language composite scores (CLC) from Bayley Scales of Infant and Toddler Development (Bayley-III) at 18-21 months and full-scale IQ (FSIQ) on Wechsler Intelligence Scale for Children (WISC-IV) at 6-8 years. Linear regression was used to assess the association between CLC and FSIQ. RESULTS:Our cohort's mean gestation was 39.8 (SD 1.6) weeks; 59% male. 80% had moderate NE. CLC scores were significantly associated with FSIQ (Coef 0.45 (95% CI: 0.17, 0.72), R2 19%). About 45% of children's cognitive scores lowered from 18 to 21 months to 6-8 years of age, with two FSIQ clusters differing by deprivation (7.3 vs 5.5, p = 0.009). Increasing CLC threshold to 95 still did not identify 63% having an FSIQ < 85. CONCLUSION:Bayley-III underestimates the delay at school age in children cooled for NE. Childhood IQ after NE appeared to be patterned by local deprivation. IMPACT:Bayley-III underestimates school-age delays in children cooled for neonatal encephalopathy secondary to perinatal asphyxia (NE). Around 45% of children's cognitive scores moved to a lower developmental range at school age. Increasing the Bayley-III threshold to 95 failed to identify nearly two-thirds of children with IQ < 85. Childhood IQ after NE appeared to be patterned by local deprivation. Longitudinal monitoring of children cooled for neonatal encephalopathy secondary to perinatal asphyxia is needed to support their cognitive development.