OBJECTIVE:To explore families' experiences of hypoxic ischaemic encephalopathy (HIE) care in the National Health Service (NHS) and the impact of HIE on families. DESIGN:Semistructured interviews (n=28) sampled to maximise variation, were conducted with parents of infants (born 2010-2024) who underwent therapeutic hypothermia for HIE. Data were analysed with reflexive thematic analysis. SETTING:Parents were recruited from across the UK, covering 84.6% (11/13) of the UK's regional neonatal networks, known as Operational Delivery Networks. FINDINGS:Three themes with eight subthemes were generated from the interview data. (1) The life-changing diagnosis of HIE: Parents described loss of stability and opportunity to parent, ongoing mental turmoil, and how the diagnosis led to transformation. (2) Balancing hope with facts: Parents opened up on how treasured their child is, the tension between hope and loss they experienced, and feelings of being kept in the dark. (3) Struggling to meet their child's needs: Parents outlined deficiencies in care infrastructure and battling disability-based discrimination. CONCLUSIONS:This study highlights the profound and life-changing impact of HIE on families. Parents described cherishing their children and experiencing personal growth. However, many also characterised how challenges were intensified by disability-based discrimination, poor communication and gaps in support across health, education and social care systems.To prevent further trauma and to support family well-being, this work identifies priority improvement areas. Embedding trauma-informed care, strengthening transparent and sensitive communication around prognostic uncertainty, and improving care coordination will help families feel seen, heard and supported throughout their journey.

Introduction Parents are central to keeping children safe when receiving healthcare. National scrutiny of failures to recognise and respond to clinical deterioration in children led to the introduction of Martha’s Rule by National Health Service (NHS) England, which formalises families’ rights to request an urgent clinical review for children. Given rising paediatric emergency department (ED) attendances and evidence of healthcare-associated harm within EDs, we examined how parents contribute to and mitigate unsafe care in this care context. Methods This was an exploratory multi-method analysis of anonymised paediatric safety incidents from EDs. We sought reports reported by EDs between 2014 and 2020. 4000 reports were reviewed to identify whether a patient safety incident had occurred and whether there was parental involvement to mitigate or contribute to the harm. Reports were categorised by incident type (what happened), contributory (why it happened), mitigatory factors (actions taken to reduce or prevent harm), outcome (patient impact) and harm severity. Results Of 658 reports that met the definition of a patient safety incident and included parental involvement, 591 (90.0%) described parents mitigating harm and 67 (10.0%) described inadvertent contribution to incidents. Parents most commonly mitigated harms by advocating for their children, prompting reassessments where necessary and supporting care. However, poor communication involving clinical information, particularly allergies or pertinent medical history, contributed to harm, leading to multiple safety incidents, including the administration of contraindicated medication within EDs. Conclusion Parents are important participants in paediatric safety within EDs, and we have identified diverse ways in which they prevent harm. As policy initiatives formalise escalation pathways, healthcare systems must strengthen mechanisms to support partnership working with families across healthcare settings, while addressing paediatric vulnerabilities that contribute to harm.

BACKGROUND:Parents play a vital role in protecting their children from healthcare-associated harms, for example, through mitigating safety incidents in general practice. Despite international calls encouraging family involvement in patient safety initiatives, parental perspectives are rarely embedded in the co-design of safety improvements. AIM:To co-generate and prioritise ideas for improving paediatric safety in general practice with parents and key stakeholders, and to explore areas of agreement and disagreement between these groups. DESIGN AND SETTING:A multi-method study combined qualitative methodology with quality improvement tools involving four parent workshops (between June and July 2024) and one stakeholder workshop (November 2024). Parent participants had experience of accessing general practice services with their children; and stakeholder participants included clinicians, managers, policymakers, primary care leaders and patient advocates. METHOD:Parent participants reviewed national-level safety incident data and used nominal group technique to generate ideas for change. Ideas were collated, refined and presented to key stakeholder participants, who assessed the potential 'doability' (can be acheived or performed) and impact of each idea. RESULTS:Parents (n = 33) generated 16 ideas for change targeting communication, access to care records and results, and shared learning and development. Stakeholders (n = 7) prioritised seven ideas, including a campaign to support parents to speak up, having flexible appointments for children and designating a parent advocate. Parents and stakeholders most strongly agreed on the need to proactively seek parent feedback and solutions. CONCLUSION:Parents are willing and able to support healthcare teams with their patient safety efforts. Their ideas align with national priorities and offer actionable strategies that general practice teams can adopt or adapt for safer paediatric care in their own populations.

Background Children are particularly vulnerable to healthcare-associated harm. Parents play a vital but under-recognised protective role in paediatric patient safety. Parent perceptions of and contributions to safety improvement efforts within hospital settings are well documented, but little is known about parent experiences and perspectives in primary care. Aim To explore diverse parental perspectives on paediatric safety in primary care and identify target areas for improvement. Design/Setting A qualitative study was conducted through online (n=2) and in-person (n=2) workshops with parents, taking place between June and July 2024. Method Workshops were structured around a descriptive analysis of paediatric patient safety incident reports in general practice. Parents discussed and reflected on their own experiences in relation to the findings. Thematic analysis of transcripts and field notes was conducted via NVIVO to identify key themes. Results Thirty-three parents from varied backgrounds, including under-served communities, participated. Three major themes are described: (1) Responsibility of care, highlighting perceived unclear roles between parents and healthcare teams; (2) Navigating the system, where parents described the need to 'fight' for care and the challenges of understanding healthcare processes; and (3) Communication and language, emphasising the difficulties of being heard, especially among ethnic minority parents and those lacking the confidence to speak up. Conclusion Parent perspectives on paediatric safety in primary care have highlighted key areas for practices, researchers and safety improvement teams to target system change and intervention development. Engaging parents as co-partners in these efforts could enhance trust, reduce risk, and improve safety outcomes for paediatric patients.

OBJECTIVE:To assess regional and temporal variation and influencing factors of low-grade intraventricular haemorrhage (IVH) incidence among preterm infants admitted to neonatal units in England. DESIGN:Population cohort study SETTING: England, UK. PATIENTS:All infants born <34 weeks' gestation between 2008 and 2019 admitted to a National Health Service neonatal unit in England (n=165 269). EVENT:Low-grade IVH (grade 1-2). MAIN OUTCOME MEASURES:Crude incidence rates and adjusted incidence rate ratios (IRRs) from Poisson models comparing calendar years, geographically defined operational delivery networks, sex and gestation. RESULTS:Low-grade IVH occurred in 8.7% (14 415/165 269) of preterm admissions. Crude incidence increased from 6.8% in 2008-2009 to 10.1% in 2018-2019. After adjustment for gestation, sex and neonatal network, incidence in 2018-2019 was higher than in 2008-2009 (adjusted IRR 1.64, 95% CI 1.51 to 1.79). Both grade 1 and grade 2 IVH rose over time. Geographical heterogeneity was pronounced: low-grade IVH incidence ranged from 2.6% to 15.9% across networks, a more than sixfold difference that persisted after case-mix adjustment. Temporal patterns also diverged by network, some showed high and rising incidence over time, while others remained lower or stable. CONCLUSION:Low-grade IVH is common among preterm admissions and recorded incidence increased between 2008 and 2019, with consistent gestational and sex patterns and substantial geographical variation. The contribution of interobserver diagnostic variability to this variation is unknown; nonetheless, the magnitude and consistency of the trends suggest a rising, potentially uneven burden of low-grade IVH in England, warranting further investigation to inform quality improvement interventions.

To explore men’s assisted reproductive technology (ART) experiences, awareness and concerns about fertility-associated health outcomes, and perceptions of using administrative health records in the United Kingdom (UK) without consent to investigate these outcomes. Over a 2-year period, all adult men were eligible to complete an anonymous online survey distributed via a UK-based fertility charity’s social media. Free-text responses underwent thematic analysis, and categorical responses were analysed with descriptive statistics and Fisher’s exact test. Among 80 participants, most were aged ≥ 40 (66.7

ImportanceIntraventricular hemorrhage (IVH) has proven to be a challenging and enduring complication of prematurity. However, its association with neurodevelopment across the spectrum of IVH severity, independent of prematurity, and in the context of contemporary care remains uncertain.ObjectiveTo evaluate national trends in IVH diagnosis and the association with survival and neurodevelopmental outcomes at 2 years of age.Design, Setting, and ParticipantsThis whole-population cohort study was conducted using data from the UK National Neonatal Research Database. Infants born at less than 29 weeks’ gestation with any grade of IVH between January 2013 and December 2019 in England were included and matched with controls. Data analysis occurred from November 2023 to June 2024.ExposureIVH grades 1 to 4 (Papile classification).Main Outcomes and MeasuresThe primary outcome was survival without severe neurodevelopmental impairment (NDI) at 2 years’ corrected age including severe delays (inability to understand or use >5 words or signs; being unable to walk, sit, or use hands; blindness; or uncorrectable hearing impairment). Secondary outcomes included gross and fine motor function, receptive and expressive communication, vision, hearing, and overall developmental progress. Outcomes were derived from clinician-entered data and analyzed using multiple logistic regression.ResultsBetween 2013 and 2019, of 26 756 infants born at less 29 weeks’ gestation in England, 8461 received a diagnosis of IVH (5570 low-grade and 2891 high-grade, and 8328 were included in the study. Overall, 5519 included infants had low-grade IVH with a median [IQR] gestational age of 26 (25-27) weeks, of which 2477 (48.88%) were male. Of the 2809 included infants with high-grade IVH, the median (IQR) gestational age was 25 (24-26) weeks and 1710 (60.88%) were male. The mean (SD) incidence of high-grade IVH (108 [6.7] per 1000 live extremely preterm births) and low-grade IVH (208 [10.4] per 1000 live extremely preterm births) increased between 2013 and 2019, although this did not reach statistical significance for high-grade IVH. Survival without severe NDI decreased significantly after high-grade IVH (a 74% reduction; aOR, 0.26; 95% CI, 0.22-0.31), and to a lesser extent after low-grade IVH (a 12% reduction; aOR, 0.88; 95% CI, 0.79-0.98). Although low-grade IVH was associated with functional impairments, most survivors, 2283 of 4379 infants (52.15%), had no NDI, and the association with NDI was accounted for by grade 2 IVH. Decreased survival without severe NDI was observed with increasing grade of IVH, decreasing gestation, bilateral compared to unilateral injuries, and increasing morbidity count (severe retinopathy of prematurity, bronchopulmonary dysplasia, and surgical necrotizing enterocolitis). Impairments in gross motor function and communication were common, especially among those with high-grade IVH (with prevalences of 44.55% [715 of 1605 infants] and 48.91% [784 of 1603 infants], respectively).Conclusions and RelevanceIn this cohort study, IVH was highlighted as a persistent issue with substantial neurodevelopmental implications despite advances in care. This study offers useful data for counseling families; however, follow-up to school age is necessary to grasp the full impact of these injuries on children’s lives.

Importance:Intraventricular hemorrhage (IVH) is a significant complication of preterm birth, affecting approximately 20% of preterm infants. Despite its prevalence, the effect of IVH beyond the impact of prematurity alone has been scarcely studied beyond early childhood, posing an important knowledge gap. Objective:To investigate the association of IVH with national school performance throughout childhood to adolescence. Design, Setting, and Participants:This population-based cohort study included all very preterm infants (<32 weeks' gestation) and full-term infants (≥37 weeks' gestation) born in New South Wales, Australia, between January 1, 2007, and December 31, 2013. Cohorts were very preterm children with low-grade (grades 1-2) or high-grade (grades 3-4) IVH, very preterm controls without IVH, and full-term controls. Analyses were conducted from January 30 to September 18, 2024. Exposure:IVH grade 1 to 4. Main Outcomes and Measures:The primary outcome was overall performance on standardized national school assessments at age 8 to 9, 10 to 11, and 12 to 13 years, including adjusted mean differences (AMDs) in z scores between children with IVH and very preterm controls. Secondary outcomes were domain-specific performance in reading, writing, spelling, grammar, and numeracy and whether children met the national minimum standards overall and for each domain. Academic trajectories were also compared by group. Results:This study included 408 189 children: 557 with low-grade IVH, 85 with high-grade IVH, 2557 very preterm controls without IVH, and 404 990 full-term controls. Children with low-grade IVH performed similarly to preterm controls at age 8 to 9 years (AMD in overall academic z score, -0.06; 95% CI, -0.14 to 0.03), 10 to 11 years (AMD, -0.09; 95% CI, -0.21 to 0.03), and 12 to 13 years (AMD, -0.04; 95% CI, -0.24 to 0.16). Children with grade 2 IVH (n = 145), however, performed significantly worse than very preterm controls at age 8 to 9 years (AMD, -0.20; 95% CI, -0.36 to -0.04). Children with high-grade IVH performed significantly worse than very preterm controls at age 8 to 9 years (AMD, -0.50; 95% CI, -0.71 to -0.30), 10 to 11 years (AMD, -0.59; 95% CI, -0.85 to -0.34), and 12 to 13 years (AMD, -0.61; 95% CI, -1.05 to -0.17). Numeracy was a consistently weak domain for children with high-grade IVH throughout school age (eg, at age 8 to 9 years, AMD in the numeracy z score compared with very preterm controls was -0.49 [95% CI, -0.70 to -0.28]). Differences in academic trajectories between groups remained fixed with increasing age; however, all groups showed improvement over time (eg, adjusted β for very preterm children, 32.3 [95% CI, 31.2-33.5]; children with low-grade IVH, 31.5 [95% CI, 29.0-34.0]; high-grade IVH, 30.2 [95% CI, 24.1-36.4]). Conclusions and Relevance:In this cohort study, the association of low-grade IVH with worse school performance appeared limited to children with grade 2 IVH. Children with high-grade IVH consistently showed poorer academic performance into adolescence than their peers born very preterm without IVH. Nevertheless, very preterm children, regardless of IVH grade, demonstrated academic progress over time, underscoring the need for ongoing educational support to help them to realize their full potential.

BACKGROUND:Children with neurodisability often have complex healthcare and educational needs. Evidence from linked administrative health and education data could improve joint working between services. OBJECTIVE:To develop a diagnostic code list to identify neurodisability in hospital admission records; to assess the representativeness of this phenotype by characterising children with hospital-recorded neurodisability and their outcomes. METHODS:We developed a national cohort of singletons born in England between 2003 and 2009, including a nested cohort of children enrolled in primary school, using linked health and education data from the Education and Child Health Insights from Linked Data (ECHILD) database. With expert clinicians, we developed an algorithm based on diagnostic information from hospital records to phenotype children with hospital-recorded neurodisability. We described rates of mortality, planned/unplanned admissions up to 11 years old, and school-recorded special educational needs (SEN) provision, as proxy measures of the complexity of a child's needs, overall and for over 40 neurodisability subgroups. RESULTS:Of 3,580,225 children in the birth cohort, 3.6% had hospital-recorded neurodisability by age 11. The most frequent subgroups included developmental disorders, autism, epilepsy, perinatal brain injury, and cerebral palsy. Children with hospital-recorded neurodisability had higher mortality and planned/unplanned admission rates compared with their peers, and they accounted for 26% of all planned and 14% of all unplanned hospital admissions before age 11. The nested primary school cohort included 2,956,299 pupils (82.6% of all births), 3.7% of whom had hospital-recorded neurodisability. 75% of children with hospital-recorded neurodisability had any school-recorded SEN provision, and 39% had a record of more intensive provision (compared to 30% and 2.4%, respectively, for their peers). CONCLUSIONS:We derived a phenotype for hospital-recorded neurodisability, which affects 1 in 28 primary school children in England, with high rates of hospital admissions and SEN provision. This phenotype and its subgroups can be used by service providers and researchers to examine inequalities and inform resource and service provision.

BACKGROUND:Children are a vulnerable patient group at risk of healthcare-associated harms, relying on others to support their healthcare needs. Parents, guardians, and caregivers may play a key role in both the aetiology and detection of unsafe care. AIM:To explore how and in what circumstances parents may inadvertently contribute to or help mitigate against paediatric patient safety incidents in general practice. DESIGN AND SETTING:A cross-sectional exploratory descriptive analysis was conducted of paediatric patient safety incidents occurring in general practice, with explicit evidence of parental involvement, between September 2014 and February 2023. METHOD:GPs coded the included reports' free text using the PatIent SAfety (PISA) classification system to identify the types of incidents, contributing factors, or mitigatory actions, and the resultant harm outcomes. Coded data were described and summarised using frequency tables and cross-tabulations. RESULTS:Of 374 reports included, most reports described mitigatory actions by parents (n = 287, 76.7%). Parents frequently mitigated incidents relating to medications (for example, prescribing), diagnosis and assessment, and administrative processes. Common mitigatory actions included recognising medication issues, chasing appointments, and providing feedback. These actions prevented harm or further harm from occurring in over half of reported incidents (54.4%, n = 156/287). CONCLUSION:The actions of parents have a direct impact on paediatric safety within general practice. This study identified several positive mitigatory actions taken by parents to keep their children safe. Primary care teams working to improve and design safer systems of care delivery for children in general practice should embrace the opportunity to learn with and from parents.

( JAMA Network Open . 2025;8(1):e2452883. doi: 10.1001/jamanetworkopen.2024.52883) Intraventricular hemorrhage (IVH), a condition involving bleeding into the brain’s ventricular system, is a serious concern among infants born very preterm. Historically, severe IVH (grades 3 and 4) has been associated with increased risks of neurodevelopmental impairment (NDI), yet the full extent of long-term consequences, especially for milder cases (grades 1 and 2), remains unclear. The study aims to understand trends in IVH diagnosis and the association of IVH with survival and NDI at 2 years of age in a contemporary population of extremely preterm infants.

OBJECTIVE:To study the school performance of children with hypoxic ischaemic encephalopathy (HIE) relative to population controls from childhood to early adolescence. DESIGN:Population-based cohort study. SETTING:New South Wales, Australia. PATIENTS:All 564 159 live-born infants ≥35 weeks' gestation born between 2008 and 2013 were eligible; 550 with HIE and 558 355 population controls. EXPOSURE:Mild, moderate-severe HIE. MAIN OUTCOME MEASURES:National school assessment performance at 8-9, 10-11 and 12-13 years. SECONDARY OUTCOMES:reading, writing, spelling, grammar and numeracy scores at these ages. Linear regression models estimated the adjusted mean difference (aMD) at each timepoint. Hierarchical growth-curve modelling assessed academic trajectories (adjusted β). RESULTS:Children with moderate-severe HIE had significantly lower total z-scores compared with controls at 8-9 years (aMD -0.70; 95% CI -0.84 to -0.52), 10-11 years (aMD -0.96; 95% CI -1.19 to -0.57) and 12-13 years (aMD -0.82; 95% CI -1.12 to -0.53), especially in reading and writing. The gap in overall mean scores remained fixed over time. Despite a lower likelihood of passing each year compared with controls, most infants with moderate-severe HIE passed each year (n=103, 62.4%). Children with mild HIE did not perform significantly differently from controls at 8-9 years (aMD -0.09; 95% CI -0.32 to 0.15), although there was a signal of worsening performance with age (β=13.54; 95% CI -21 to -6.07). CONCLUSIONS:Children with moderate-severe HIE perform at a lower academic level than their peers, yet most meet national standards up to early adolescence. In contrast, children with mild HIE perform on par with their peers. This information is crucial for families: providing reassurance and a basis for needed support.

AIM:To assess the association between problematic smartphone usage and anxiety and depression in adolescents. METHODS:A cross-sectional study in five schools in the UK were included. The primary outcome was moderate anxiety (GAD-7 ≥10) symptoms and secondary outcomes were moderate depression symptoms (PHQ-9 ≥10) and insomnia. Problematic smartphone usage was assessed using screentime and the Smartphone Addiction Scale. A multi-level logistic regression was fitted and adjusted Odds Ratio (aOR) with 95% confidence intervals (95% CI) reported. A mediation analysis was conducted. RESULTS:Of the five included schools, 657 adolescents aged 16-18 years were enrolled. The median age was 17.5 years (17-18 [IQR]) and 508 (77.3%) were female. Of these 188 (28.6%) exhibited moderate anxiety and 226 (34.4%) moderate depression symptoms. Almost two thirds (421, 64.1%) have tried to cut down their smartphone use and 81 (12.5%) wanted help to reduce use. Problematic smartphone use was associated with increased anxiety (aOR = 2.03, 95% CI 1.28-3.23); depression (aOR = 2.96, 95% CI 1.80-4.86); and insomnia (aOR = 1.64, 95% CI 1.08-2.50). Screentime was not associated with anxiety (β = 0.99, 95% CI 0.91-1.08); or depression (β = 0.98, 95% CI 0.89-1.07). Problematic smartphone use had a significant direct, indirect and total effect on both anxiety and depression. CONCLUSION:Problematic smartphone usage was associated with anxiety and depression, independent of screentime. Interventions are needed to reduce problematic use.

To assess the association between problematic smartphone usage and anxiety and depression in adolescents. A cross-sectional study in five schools in the UK were included. The primary outcome was moderate anxiety (GAD-7 ≥10) symptoms and secondary outcomes were moderate depression symptoms (PHQ-9 ≥10) and insomnia. Problematic smartphone usage was assessed using screentime and the Smartphone Addiction Scale. A multi-level logistic regression was fitted and adjusted Odds Ratio (aOR) with 95% confidence intervals (95% CI) reported. A mediation analysis was conducted. Of the five included schools, 657 adolescents aged 16–18 years were enrolled. The median age was 17.5 years (17–18 [IQR]) and 508 (77.3%) were female. Of these 188 (28.6%) exhibited moderate anxiety and 226 (34.4%) moderate depression symptoms. Almost two thirds (421, 64.1%) have tried to cut down their smartphone use and 81 (12.5%) wanted help to reduce use. Problematic smartphone use was associated with increased anxiety (aOR = 2.03, 95% CI 1.28–3.23); depression (aOR = 2.96, 95% CI 1.80–4.86); and insomnia (aOR = 1.64, 95% CI 1.08–2.50). Screentime was not associated with anxiety ( β  = 0.99, 95% CI 0.91–1.08); or depression ( β  = 0.98, 95% CI 0.89–1.07). Problematic smartphone use had a significant direct, indirect and total effect on both anxiety and depression. Problematic smartphone usage was associated with anxiety and depression, independent of screentime. Interventions are needed to reduce problematic use.

Introduction Over 3000 infants suffer a brain injury around the time of birth every year in England. Although these injuries can have important implications for children and their families, our understanding of how these injuries affect children’s lives is limited.Methods and analysis The aim of the CHERuB study (Childhood Health and Educational outcomes afteR perinatal Brain injury) is to investigate longitudinal childhood health and educational outcomes after perinatal brain injury through the creation of a population-matched cohort study. This study will use the Department of Health and Social Care definition of perinatal brain injury which includes infants with intracranial haemorrhage, preterm white matter injury, hypoxic ischaemic encephalopathy, perinatal stroke, central nervous system infections, seizures and kernicterus. All children born with a perinatal brain injury in England between 2008 and 2019 will be included (n=54 176) and two matched comparator groups of infants without brain injury will be created: a preterm control group identified from the National Neonatal Research Data Set and a term/late preterm control group identified using birth records. The national health, education and social care records of these infants will be linked to ascertain their longitudinal childhood outcomes between 2008 and 2023. This cohort will include approximately 170 000 children. The associations between perinatal brain injuries and survival without neurosensory impairment, neurodevelopmental impairments, chronic health conditions and mental health conditions throughout childhood will be examined using regression methods and time-to-event analyses.Ethics and dissemination This study has West London Research Ethics Committee and Confidential Advisory Group approval (20/LO/1023 and 22/CAG/0068 issued 20/10/2022). Findings will be published in open-access journals and publicised via the CHERuB study website, social media accounts and our charity partners.

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Objectives Healthcare-associated harm is an international public health issue.1 Children are a particularly vulnerable group, with 15%–35% of hospitalised children experiencing harm whilst receiving medical care.2Whilst many factors increase the risk of adverse events, such as a child's dependency on others to recognise and respond to illness, children have a unique protective factor in the form of their parents (guardians and families), who are well placed to detect and prevent unsafe care. Martha's Rule highlights the need to more effectively enable parents to function as safety advocates.3 We aimed to characterise the role of parents in mitigating patient safety incidents involving children within Emergency Departments.4 Methods Free text of patient safety incident reports submitted from Emergency Departments in England and Wales between 2014–2020 to the National Reporting Learning System (now the Learning from Patient Safety Events Service) were searched for terms like *parent*, *dad*, and *mother*. We were provided with 12,300 reported and created a weighted sample of 4000 reports.4 Two trained paediatricians and a general practitioner reviewed reports which were included for analysis if there was clear evidence in the narrative of parental involvement directly related to the reported incident. Reports were systematically coded using the Patient Safety (PISA) classification system.5 An inductive thematic analysis in NVivo informed the development of a mitigatory factor framework. An exploratory descriptive analysis identified the most frequent semantic relationships between type of incident, mitigating factors, and harm outcomes. Results A total of 1065 (27%) reports were included for analysis. Parents were involved in mitigating incidents in over two thirds of reports (714, 67%). The most common mitigatory factors included: 'family advocates for child', 'parent expresses concern about care given', and 'family chases healthcare appointment'. The most frequent incidents with parental mitigatory factors related to diagnosis and assessment (157, 22%), e.g., a missed diagnosis, medication (150, 21%), e.g., wrong medication prescribed, and treatment (89, 13%), e.g., insufficient treatment given. In 229 (32%) of these reports, parents prevented harm or further harm. Conclusion Parents play a key role in preventing safety incidents and harms when their children receive healthcare in Emergency Departments. Identification of mitigation factors within incident report narratives will support health systems to identify where they should investigate further or intervene to improve safety. Our analysis has identified priority areas to enable the co-development of recommendations and strategies to deliver safer paediatric care and support parents as child safety advocates. References Global Patient Safety Action Plan 2021–2030. World Health Organization, 2021. Walsh, et al. Preventing health care-associated harm in children. JAMA, 2014 NHS to introduce Martha's rule for hospital patients. BBC News, 2023. Rees, et al. Family role in paediatric safety incidents: a retrospective study protocol. BMJ Open, 2023. Carson-Stevens. A cross-sectional mixed methods study protocol to generate learning from patient safety incidents reported from general practice. BMJ Open, 2015.

Importance:Inequalities in preterm infant mortality exist between population subgroups within the United States. Objective:To characterize trends in preterm infant mortality by maternal race and socioeconomic status to assess how inequalities in preterm mortality rates have changed over time. Design, Setting, and Participants:This was a retrospective longitudinal descriptive study using the US National Center for Health Statistics birth infant/death data set for 12 256 303 preterm infant births over 26 years, between 1995 and 2020. Data were analyzed from December 2022 to March 2023. Exposures:Maternal characteristics including race, smoking status, educational attainment, antenatal care, and insurance status were used as reported on an infant's US birth certificate. Main Outcomes and Measures:Preterm infant mortality rate was calculated for each year from 1995 to 2020 for all subgroups, with a trend regression coefficient calculated to describe the rate of change in preterm mortality. Results:The average US preterm infant mortality rate (IMR) decreased from 33.71 (95% CI, 33.71 to 34.04) per 1000 preterm births per year between 1995-1997, to 23.32 (95% CI, 23.05 to 23.58) between 2018-2020. Black non-Hispanic infants were more likely to die following preterm births than White non-Hispanic infants (IMR, 31.09; 95% CI, 30.44 to 31.74, vs 21.81; 95% CI, 21.43 to 22.18, in 2018-2020); however, once born, extremely prematurely Black and Hispanic infants had a narrow survival advantage (IMR rate ratio, 0.87; 95% CI, 0.84 to 0.91, in 2018-2020). The rate of decrease in preterm IMR was higher in Black infants (-0.015) than in White (-0.013) and Hispanic infants (-0.010); however, the relative risk of preterm IMR among Black infants compared with White infants remained the same between 1995-1997 vs 2018-2020 (relative risk, 1.40; 95% CI, 1.38 to 1.44, vs 1.43; 95% CI, 1.39 to 1.46). The rate of decrease in preterm IMR was higher in nonsmokers compared with smokers (-0.015 vs -0.010, respectively), in those with high levels of education compared with those with intermediate or low (-0.016 vs - 0.010 or -0.011, respectively), and in those who had received adequate antenatal care compared with those who did not (-0.014 vs -0.012 for intermediate and -0.013 for inadequate antenatal care). Over time, the relative risk of preterm mortality widened within each of these subgroups. Conclusions and Relevance:This study found that between 1995 and 2020, US preterm infant mortality improved among all categories of prematurity. Inequalities in preterm infant mortality based on maternal race and ethnicity have remained constant while socioeconomic disparities have widened over time.

OBJECTIVE:The aim of this study was to investigate tested methods of population-based biliary atresia (BA) screening.DESIGN:We searched 11 databases between 1 January 1975 and 12 September 2022. Data extraction was independently done by two investigators.MAIN OUTCOME MEASURES:Our primary outcomes were: sensitivity and specificity of screening method in BA detection, age at Kasai, BA associated morbidity and mortality, cost-effectiveness of screening.RESULTS:Six methods of BA screening were evaluated: stool colour charts (SCCs), conjugated bilirubin measurements, stool colour saturations (SCSs), measurements of urinary sulfated bile acids (USBAs), assessments of blood spot bile acids and blood carnitine measurements.In a meta-analysis, USBA was the most sensitive and specific, with a pooled sensitivity and specificity of 100.0% (95% CI 2.5% to 100.0%) and 99.5% (95% CI 98.9% to 99.8%) (based on one study). This was followed by conjugated bilirubin measurements: 100.0% (95% CI 0.0% to 100.0%) and 99.3% (95% CI 91.9% to 99.9%), SCS: 100.0% (95% CI 0.00% to 100.0%) and 92.4% (95% CI 83.4% to 96.7%), and SCC: 87.9% (95% CI 80.4% to 92.8%) and 99.9% (95% CI 99.9% to 99.9%).SCC reduced the age of Kasai to ~60 days, compared with 36 days for conjugated bilirubin. Both SCC and conjugated bilirubin improved overall and transplant-free survival. The use of SCC was considerably more cost-effective than conjugated bilirubin measurements.CONCLUSION:Conjugated bilirubin measurements and SCC are the most researched and demonstrate improved sensitivity and specificity in detecting BA. However, their use is expensive. Further research into conjugated bilirubin measurements, as well as alternative methods of population-based BA screening, is required.PROSPERO REGISTRATION NUMBER:CRD42021235133.

AIM:To undertake a systematic review and meta-analysis exploring school-age neurodevelopmental outcomes of children after low-grade intraventricular haemorrhage (IVH). METHOD:The published and grey literature was extensively searched to identify observational comparative studies exploring neurodevelopmental outcomes after IVH grades 1 and 2. Our primary outcome was neurodevelopmental impairment after 5 years of age, which included cognitive, motor, speech and language, behavioural, hearing, or visual impairments. RESULTS:This review included 12 studies and over 2036 infants born preterm with low grade IVH. Studies used 30 different neurodevelopmental tools to determine outcomes. There was conflicting evidence of the composite risk of neurodevelopmental impairment after low-grade IVH. There was evidence of an association between low-grade IVH and lower IQ at school age (-4.23, 95% confidence interval [CI] -7.53, -0.92, I2  = 0%) but impact on school performance was unclear. Studies reported an increased crude risk of cerebral palsy after low-grade IVH (odds ratio [OR] 2.92, 95% CI 1.95, 4.37, I2  = 41%). No increased risk of speech and language impairment or behavioural impairment was found. Few studies addressed hearing and visual impairment. INTERPRETATION:This systematic review presents evidence that low-grade IVH is associated with specific neurodevelopmental impairments at school age, lending support to the theory that low-grade IVH is not a benign condition. WHAT THIS PAPER ADDS:The functional impact of low-grade intraventricular haemorrhage (IVH) at school age is unknown. Low-grade IVH is associated with a lower IQ at school age. The risk of cerebral palsy is increased after low-grade IVH. Low-grade IVH is not associated with speech and language impairment.