Evaluating the real-world implementation of the Family Nurse Partnership in England: a data linkage study.

Background/objectives: The Family Nurse Partnership is an intensive home visiting programme for adolescent mothers. We aimed to evaluate the effectiveness of the Family Nurse Partnership on outcomes up to age 7 using national administrative data. Design: We created a linked cohort of all mothers aged 13-19 using data from health, educational and children's social care and defined mothers enrolled in the Family Nurse Partnership or not using Family Nurse Partnership system data. Propensity scores were used to create matched groups for analysis. Setting: One hundred and thirty-six local authorities in England with active Family Nurse Partnership sites between 2010 and 2017. Participants: Mothers aged 13-19 at last menstrual period with live births between April 2010 and March 2019, living in a Family Nurse Partnership catchment area and their firstborn child(ren). Interventions: The Family Nurse Partnership includes up to 64 home visits by a family nurse from early pregnancy until the child's second birthday and is combined with usual health and social care. Controls received usual health and social care. Main outcome measures: Indicators of child maltreatment (hospital admissions for injury/maltreatment, referral to social care services); child health and development (hospital utilisation and education) outcomes and maternal hospital utilisation and educational outcomes up to 7 years following birth. Data sources: Family Nurse Partnership Information System, Hospital Episode Statistics, National Pupil Database. Results: Of 110,520 eligible mothers, 25,680 (23.2%) were enrolled in the Family Nurse Partnership. Enrolment rates varied across 122 sites (range: 11-68%). Areas with more eligible mothers had lower enrolment rates. Enrolment was higher among mothers aged 13-15 (52%), than 18-19 year-olds (21%). Indicators of child maltreatment: we found no evidence of an association between the Family Nurse Partnership and indicators of child maltreatment, except for an increased rate of unplanned admissions for maltreatment/injury-related diagnoses up to age 2 for children born to Family Nurse Partnership mothers (6.6% vs. 5.7%, relative risk 1.15; 95% confidence interval 1.07 to 1.24). Child health and developmental outcomes: there was weak evidence that children born to Family Nurse Partnership mothers were more likely to achieve a Good Level of Development at age 5 (57.5% vs. 55.4%, relative risk 1.05; 95% confidence interval 1.00 to 1.09). Maternal outcomes: There was some evidence that Family Nurse Partnership mothers were less likely to have a subsequent delivery within 18 months of the index birth (8.4% vs. 9.3%, relative risk 0.92; 95% confidence interval 0.88 to 0.97). Younger and more vulnerable mothers received higher numbers of visits and were more likely to achieve fidelity targets. Meeting the fidelity targets was associated with some outcomes. Limitations: Bias by indication and variation in the intervention and usual care over time and between areas may have limited our ability to detect effects. Multiple testing may have led to spurious, significant results. Conclusions: This study supports findings from evaluations of the Family Nurse Partnership showing no evidence of benefit for maltreatment outcomes measured in administrative data. Amongst all the outcomes measured, we found weak evidence that the Family Nurse Partnership was associated with improvements in child development at school entry, a reduction in rapid repeat pregnancies and evidence of increased healthcare-seeking in the mother and child. Future work: Future evaluations should capture better measures of Family Nurse Partnership interventions and usual care, more information on maternal risk factors and additional outcomes relating to maternal well-being. Study registration: The study is registered as NIHR CRN Portfolio (42900). Funding: This award was funded by the National Institute of Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/99/19) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 11. See the NIHR Funding and Awards website for further award information.

The Family Nurse Partnership is an intensive home visiting service that offers first-time young mothers up to 64 visits with a family nurse from pregnancy to their child's second birthday. The Family Nurse Partnership aims to improve birth outcomes, child health and development and promote economic self-sufficiency among young mothers. Previous research in England found no differences in birthweight, maternal smoking, repeat pregnancies or accident and emergency attendances between mothers who did or did not take part in the Family Nurse Partnership. However, children in the Family Nurse Partnership group had better measures of development at school age. We aimed to add to the evidence from earlier studies, by using electronic records that are routinely collected as part of health, education and social care services, to compare outcomes for around 26,000 mothers enrolled in the Family Nurse Partnership between 2010 and 2019 with similar mothers who were not enrolled. This study showed that around one in four mothers who were eligible for the programme were enrolled in the Family Nurse Partnership, and family nurses gave priority to mothers who were younger, more deprived or who had other markers of vulnerability (e.g. a history of substance misuse violence, self-harm or mental health conditions). We found no evidence of a difference in indicators of child maltreatment between mothers who were enrolled in the Family Nurse Partnership and those who were not enrolled, but we found weak evidence to suggest that children born to mothers enrolled in the Family Nurse Partnership were more likely to achieve a Good Level of Development at school entry (age 5). We also saw that mothers enrolled in the Family Nurse Partnership were less likely than those who were not enrolled to have their next child within 18 months of their first child. More research is needed to understand which elements of intensive home visiting services work best, for whom and when. This will help inform decisions about whether it is better to offer highly intensive services for a small portion of the target population or to extend and enhance existing universal health visiting services to better support all adolescent mothers.

Child maltreatment and parental domestic violence and abuse, co-occurrence and the effect on lifetime outcomes in the Avon Longitudinal Study of Parents and Children (ALSPAC).

Exposure to child maltreatment (CM), and parental domestic violence and abuse (DVA), impose considerable adverse life outcomes in both the short and long term, yet, the extent and effects of their co-occurrence on outcomes have not been comprehensively quantified. This study describes the analysis of data from the Avon Longitudinal Study of Parents and Children, quantifying the prevalence of CM, parental DVA, co-occurrence rates, and the impact of different combinations of childhood exposures on life outcomes (health, economic, and likelihood of perpetrating intimate partner violence as a young person). Childhood exposure prevalences were estimated at 41.7% for any form of CM, 19.3% for parental DVA, and 49.0% for exposure to at least one form of CM and/or parental DVA. Co-occurring parental DVA was reported in 21%-42% of CM-exposed households. Sexual abuse was reported in 2% of parental DVA-exposed households, whilst co-occurrence of other forms of CM ranged between 19% and 41%. Co-occurring CM and parental DVA exposures were associated with increased risks of drug use, anxiety, depression, smoking, unemployment, social welfare use, and perpetration of intimate partner violence as a young person - highlighting the intergenerational effects of exposure. Increased risks across a wider range of adverse outcomes were associated with child-reported awareness of parental DVA, compared to parent-reported DVA exposure. The high cumulative prevalence of childhood exposure to CM and/or parental DVA, and the scale of the resulting adverse impacts emphasise the need for policies and family interventions sensitive to the possibility of co-occurring forms of abuse.

Evaluation of variation in special educational needs provision and its impact on health and education using administrative records for England: umbrella protocol for a mixed-methods research programme.

INTRODUCTION: One-third of children in England have special educational needs (SEN) provision recorded during their school career. The proportion of children with SEN provision varies between schools and demographic groups, which may reflect variation in need, inequitable provision and/or systemic factors. There is scant evidence on whether SEN provision improves health and education outcomes. METHODS: The Health Outcomes of young People in Education (HOPE) research programme uses administrative data from the Education and Child Health Insights from Linked Data-ECHILD-which contains data from all state schools, and contacts with National Health Service hospitals in England, to explore variation in SEN provision and its impact on health and education outcomes. This umbrella protocol sets out analyses across four work packages (WP). WP1 defined a range of 'health phenotypes', that is health conditions expected to need SEN provision in primary school. Next, we describe health and education outcomes (WP1) and individual, school-level and area-level factors affecting variation in SEN provision across different phenotypes (WP2). WP3 assesses the impact of SEN provision on health and education outcomes for specific health phenotypes using a range of causal inference methods to account for confounding factors and possible selection bias. In WP4 we review local policies and synthesise findings from surveys, interviews and focus groups of service users and providers to understand factors associated with variation in and experiences of identification, assessment and provision for SEN. Triangulation of findings on outcomes, variation and impact of SEN provision for different health phenotypes in ECHILD, with experiences of SEN provision will inform interpretation of findings for policy, practice and families and methods for future evaluation. ETHICS AND DISSEMINATION: Research ethics committees have approved the use of the ECHILD database and, separately, the survey, interviews and focus groups of young people, parents and service providers. These stakeholders will contribute to the design, interpretation and communication of findings.

The impact of area level mental health interventions on outcomes for secondary school pupils: Evidence from the HeadStart programme in England.

In light of the dramatic rise in mental health disorders amongst adolescents seen in the past decade across the world, there is an urgent need for robust evidence on what works to combat this trend. This paper provides the first robust evaluation of the impacts on school outcomes of 6-year funding programme (HeadStart) for area-level mental health interventions for adolescents. Exploiting educational administrative data on ten cohorts of state-educated secondary school students, we use the synthetic control method to construct counterfactual outcomes for areas that received the funding. We show that the funding did not affect students' absenteeism or academic attainment, but it prevented around 800 students (c. 10% of students typically excluded yearly) from being excluded in its first year. The transient nature of this effect suggests that sustained funding for intervention may be a necessary but not sufficient condition to maintain programme effectiveness over time.

Lessons learned from using linked administrative data to evaluate the Family Nurse Partnership in England and Scotland.

Introduction: "Big data" - including linked administrative data - can be exploited to evaluate interventions for maternal and child health, providing time- and cost-effective alternatives to randomised controlled trials. However, using these data to evaluate population-level interventions can be challenging. Objectives: We aimed to inform future evaluations of complex interventions by describing sources of bias, lessons learned, and suggestions for improvements, based on two observational studies using linked administrative data from health, education and social care sectors to evaluate the Family Nurse Partnership (FNP) in England and Scotland. Methods: We first considered how different sources of potential bias within the administrative data could affect results of the evaluations. We explored how each study design addressed these sources of bias using maternal confounders captured in the data. We then determined what additional information could be captured at each step of the complex intervention to enable analysts to minimise bias and maximise comparability between intervention and usual care groups, so that any observed differences can be attributed to the intervention. Results: Lessons learned include the need for i) detailed data on intervention activity (dates/geography) and usual care; ii) improved information on data linkage quality to accurately characterise control groups; iii) more efficient provision of linked data to ensure timeliness of results; iv) better measurement of confounding characteristics affecting who is eligible, approached and enrolled. Conclusions: Linked administrative data are a valuable resource for evaluations of the FNP national programme and other complex population-level interventions. However, information on local programme delivery and usual care are required to account for biases that characterise those who receive the intervention, and to inform understanding of mechanisms of effect. National, ongoing, robust evaluations of complex public health evaluations would be more achievable if programme implementation was integrated with improved national and local data collection, and robust quasi-experimental designs.

Family adversity and health characteristics associated with intimate partner violence in children and parents presenting to health care: a population-based birth cohort study in England.

BACKGROUND: Little is known about the clinical characteristics of children and parents affected by intimate partner violence (IPV) presenting in health-care settings. We examined the associations between family adversities, health characteristics, and IPV in children and parents using linked electronic health records (EHRs) from primary and secondary care between 1 year before and 2 years after birth (the first 1000 days). We compared parental health problems in in children and parents with and without recorded IPV. METHODS: We developed a population-based birth cohort of children and parents (aged 14-60 years) in England, comprising linked EHRs from mother-child pairs (with no identified father) and mother-father-child triads. We followed the cohort across general practices (Clinical Practice Research Datalink GOLD), emergency departments, outpatient visits, hospital admissions, and mortality records. Family adversities included 33 clinical indicators of parental mental health problems, parental substance misuse, adverse family environments, and high-risk child maltreatment-related presentations. Parental health problems included 12 common comorbidities, ranging from diabetes and cardiovascular diseases to chronic pain or digestive diseases. We used adjusted and weighted logistic-regression models to estimate the probability of IPV (per 100 children and parents) associated with each adversity, and period prevalences of parental health problems associated with IPV. FINDINGS: We included 129 948 children and parents, comprising 95 290 (73·3%) mother-father-child triads and 34 658 (26·7%) mother-child pairs only between April 1, 2007, and Jan 29, 2020. An estimated 2689 (2·1%) of 129 948 children and parents (95% CI 2·0-2·3) had recorded IPV and 54 758 (41·2%; 41·5-42·2) had any family adversity between 1 year before and 2 years after birth. All family adversities were significantly associated with IPV. Most parents and children with IPV had recorded adversities (1612 [60·0%] of 2689) before their first IPV recording. The probability of IPV was 0·6 per 100 children and parents (95% CI 0·5-0·6) with no adversity, increasing to 4·4 per 100 children per parents (4·2-4·7) with one adversity, and up to 15·1 per 100 parents and children (13·6-16·5) with three of more adversities. Mothers with IPV had a significantly higher prevalence of both physical (73·4% vs 63·1%, odds ratio [OR] 1·6, 95% CI 1·4-1·8) and mental health problems (58·4% vs 22·2%, OR 4·9, 4·4-5·5) than mothers without IPV. Fathers with IPV had a higher prevalence of mental health problems (17·8% vs 7·1%, OR 2·8, 2·4-3·2) and similar prevalences of physical health problems than those without IPV (29·6% vs 32·4%, OR 0·9, 0·8-1·0). INTERPRETATION: Two in five of the children and parents presenting to health care had recorded parental mental health problems, parental substance misuse, adverse family environments, or high-risk presentations of maltreatment in the first 1000 days. One in 22 children and parents with family adversity also had recorded IPV before age 2 years. Primary and secondary care staff should safely ask about IPV when parents or children present with family adversity or health problems associated with IPV, and respond appropriately. FUNDING: NIHR Policy Research Programme.

Risk of school exclusion among adolescents receiving social care or special educational needs services: A whole-population administrative data cohort study.

BACKGROUND: Exclusion from school is associated with health, well-being and social detriments and disproportionately affects vulnerable children. No study in England has examined the total cumulative risk of exclusion across secondary school among children with a history of children's social care (CSC) or special educational needs (SEN). OBJECTIVE: To assess the risk of any secondary school exclusion among adolescents receiving CSC or SEN services compared with their peers. METHODS: An administrative data cohort study comparing children in English state schools (n = 1,031,500) with no history of CSC or SEN provision with children who had received different levels of CSC and SEN in combination. Outcomes were proportions of students with any fixed-term or permanent exclusion in years 7 to 9 (age 11 to 14) and years 10 to 11 (age 14 to 16). RESULTS: Overall, 13 % of children were excluded at least once across years 7 to 11. CSC exposure was associated with exclusion risk: 32 % of children in need (or formerly in need) and 40 % of current or former children looked after and those subject to child protection plans were excluded at least once across years 7 to 11, compared to 12 % of the non-exposed group. After adjusting for confounders, children with SEN history were more at risk of exclusion, regardless of CSC exposure category (except for exclusions among children looked after during years 10 to 11). Rates of exclusion varied significantly between local authorities. CONCLUSIONS: Large inequalities in school exclusion rates between CSC-exposed and unexposed children were observed, with even higher rates observed for children with SEN history. These inequalities undermine the right to education of these vulnerable groups of children.

Factors mitigating the harmful effects of intimate partner violence on adolescents' depressive symptoms-A longitudinal birth cohort study.

Background: Preventing parental intimate partner violence (IPV) or mitigating its negative effects early in the lifecourse is likely to improve population mental health. However, prevention of IPV is highly challenging and we know very little about how the mental health of children exposed to IPV can be improved. This study assessed the extent to which positive experiences were associated with depressive symptoms among children with and without experience of IPV. Method: This study used data from the Avon Longitudinal Study of Parents and Children, a population-based birth cohort. After excluding those without information on depressive symptoms at age 18, the final sample comprised 4490 participants. Parental intimate partner violence (physical or emotional cruelty reported by mother or partner) when the cohort child was aged 2-9 years. Depressive symptoms were measured with the Short Mood and Feelings Questionnaire (SMFQ) at age 18 years. Results: Each additional report of parental intimate partner violence (over six reports) was associated with 0.047 (95% CI 0.027-0.066), or 4.7%, higher SMFQ score. Conversely, each additional positive experience (over 11 domains) was linked with -0.042 (95% CI -0.060 to -0.025) or 4.1%, lower SMFQ score. Among those with parental intimate partner violence (19.6% of participants), relationship with peers (effect size = 3.5%), school enjoyment (effect size = 1.2%), neighbourhood safety and cohesion (effect size = 1.8%) were associated with lower levels of depressive symptoms. Conclusions: Most positive experiences were linked with lower levels of depressive symptoms regardless of parental intimate partner violence exposure. However, among those with parental IPV, this association was found only for relationships with peers, school enjoyment, neighbourhood safety and cohesion on depressive symptoms. If our findings are assumed to be causal, nurturing these factors may mitigate the harmful effects of parental intimate partner violence on depressive symptoms in adolescence.

Using administrative data to evaluate national policy impacts on child and maternal health: a research framework from the Maternal and Child Health Network (MatCHNet).

Reducing health inequalities by addressing the social circumstances in which children are conceived and raised is a societal priority. Early interventions are key to improving outcomes in childhood and long-term into adulthood. Across the UK nations, there is strong political commitment to invest in the early years. National policy interventions aim to tackle health inequalities and deliver health equity for all children. Evidence to determine the effectiveness of socio-structural policies on child health outcomes is especially pressing given the current social and economic challenges facing policy-makers and families with children. As an alternative to clinical trials or evaluating local interventions, we propose a research framework that supports evaluating the impact of whole country policies on child health outcomes. Three key research challenges must be addressed to enable such evaluations and improve policy for child health: (1) policy prioritisation, (2) identification of comparable data and (3) application of robust methods.

Umbrella systematic review finds limited evidence that school absence explains the association between chronic health conditions and lower academic attainment.

Introduction: Absence from school is more frequent for children with chronic health conditions (CHCs) than their peers and may be one reason why average academic attainment scores are lower among children with CHCs. Methods: We determined whether school absence explains the association between CHCs and academic attainment through a systematic review of systematic reviews of comparative studies involving children with or without CHCs and academic attainment. We extracted results from any studies that tested whether school absence mediated the association between CHCs and academic attainment. Results: We identified 27 systematic reviews which included 441 unique studies of 7, 549, 267 children from 47 jurisdictions. Reviews either covered CHCs generally or were condition-specific (e.g., chronic pain, depression, or asthma). Whereas reviews found an association between a range of CHCs (CHCs generally, cystic fibrosis, hemophilia A, end-stage renal disease (pre-transplant), end-stage kidney disease (pre-transplant), spina bifida, congenital heart disease, orofacial clefts, mental disorders, depression, and chronic pain) and academic attainment, and though it was widely hypothesized that absence was a mediator in these associations, only 7 of 441 studies tested this, and all findings show no evidence of absence mediation. Conclusion: CHCs are associated with lower academic attainment, but we found limited evidence of whether school absence mediates this association. Policies that focus solely on reducing school absence, without adequate additional support, are unlikely to benefit children with CHCs. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=285031, identifier: CRD42021285031.

Association of Interparental Violence and Maternal Depression With Depression Among Adolescents at the Population and Individual Level.

Importance: Parental intimate partner violence (IPV) and maternal depression are associated with increased risk of depression in children at the population level. However, it is not known whether having information about these experiences can accurately identify individual children at higher risk of depression. Objective: To examine the extent to which experiencing parental IPV and/or maternal depression before age 12 years is associated with depression at age 18 years at the population and individual level. Design, Setting, and Participants: This cohort study used data from the Avon Longitudinal Study of Parents and Children, a UK population-based birth cohort, which initially recruited pregnant mothers with estimated due dates in 1991 and 1992. Data used in this study were collected from 1991 to 2009. Data analysis was performed from February to March 2022. Exposures: Mother-reported parental IPV was assessed on 8 occasions (child age, 1-11 years). Maternal depression was assessed via the Edinburgh Postnatal Depression Scale or by the mother taking medication for depression, as reported by the mother on 8 occasions (child age, 2-12 years). Main Outcomes and Measures: Depressive symptoms were measured with the Short Mood and Feelings Questionnaire (SMFQ) and Clinical Interview Schedule-Revised (CIS-R) when the child was aged 18 years. Binary indicators of a case of depression were derived the cutoff point of 11 points or above for the SMFQ and 12 points or above for the CIS-R. Results: The study included 5029 children (2862 girls [56.9%]; 2167 boys [43.1%]) with a measure of depressive symptoms at age 18 years. IPV only was associated with a 24% (adjusted risk ratio, 1.24; 95% CI, 0.97-1.59) higher risk of depression at age 18 years, exposure to maternal depression only was associated with a 35% (adjusted risk ratio, 1.35; 95% CI, 1.11-1.64) higher risk, and exposure to both IPV and maternal depression was associated with a 68% (adjusted risk ratio, 1.68; 95% CI, 1.34-2.10) higher risk. At the individual level, the area under the receiver operating characteristic curve was 0.58 (95% CI, 0.55-0.60) for depression according to the SMFQ and 0.59 (95% CI, 0.55-0.62) for the CIS-R, indicating a 58% to 59% probability (ie, 8%-9% above chance) that a random participant with depression at age 18 years had been exposed to IPV and/or maternal depression compared with a random participant who did not have depression. Conclusions and Relevance: In this cohort study, parental IPV and maternal depression were associated with depression in adolescence at the population level. However, estimation of an individual developing depression in adolescence based only on information about IPV or maternal depression is poor. Screening children for maternal depression and IPV to target interventions to prevent adolescent depression will fail to identify many children who might benefit and may unnecessarily target many others who do not develop depression.

Identifying opportunities for upstream evaluations relevant to child and maternal health: a UK policy-mapping review.

OBJECTIVE: Interventions to tackle the social determinants of health can improve outcomes during pregnancy and early childhood, leading to better health across the life course. Variation in content, timing and implementation of policies across the 4 UK nations allows for evaluation. We conducted a policy-mapping review (1981-2021) to identify relevant UK early years policies across the social determinants of health framework, and determine suitable candidates for evaluation using administrative data. METHODS: We used open keyword and category searches of UK and devolved Government websites, and hand searched policy reviews. Policies were rated and included using five criteria: (1) Potential for policy to affect maternal and child health outcomes; (2) Implementation variation across the UK; (3) Population reach and expected effect size; (4) Ability to identify exposed/eligible group in administrative data; (5) Potential to affect health inequalities. An expert consensus workshop determined a final shortlist. RESULTS: 336 policies and 306 strategy documents were identified. Policies were mainly excluded due to criteria 2-4, leaving 88. The consensus workshop identified three policy areas as suitable candidates for natural experiment evaluation using administrative data: pregnancy grants, early years education and childcare, and Universal Credit. CONCLUSION: Our comprehensive policy review identifies valuable opportunities to evaluate sociostructural impacts on mother and child outcomes. However, many potentially impactful policies were excluded. This may lead to the inverse evidence law, where there is least evidence for policies believed to be most effective. This could be ameliorated by better access to administrative data, staged implementation of future policies or alternative evaluation methods.

Trends in survival of children with severe congenital heart defects by gestational age at birth: A population-based study using administrative hospital data for England.

BACKGROUND: Children with congenital heart defects (CHD) are twice as likely as their peers to be born preterm (<37 weeks' gestation), yet descriptions of recent trends in long-term survival by gestational age at birth (GA) are lacking. OBJECTIVES: To quantify changes in survival to age 5 years of children in England with severe CHD by GA. METHODS: We estimated changes in survival to age five of children with severe CHD and all other children born in England between April 2004 and March 2016, overall and by GA-group using linked hospital and mortality records. RESULTS: Of 5,953,598 livebirths, 5.7% (339,080 of 5,953,598) were born preterm, 0.35% (20,648 of 5,953,598) died before age five and 3.6 per 1000 (21,291 of 5,953,598) had severe CHD. Adjusting for GA, under-five mortality rates fell at a similar rate between 2004-2008 and 2012-2016 for children with severe CHD (adjusted hazard ratio [HR] 0.79, 95% CI 0.71, 0.88) and all other children (HR 0.78, 95% CI 0.76, 0.81). For children with severe CHD, overall survival to age five increased from 87.5% (95% CI 86.6, 88.4) in 2004-2008 to 89.6% (95% CI 88.9, 90.3) in 2012-2016. There was strong evidence for better survival in the ≥39-week group (90.2%, 95% CI 89.1, 91.2 to 93%, 95% CI 92.4, 93.9), weaker evidence at 24-31 and 37-38 weeks and no evidence at 32-36 weeks. We estimate that 51 deaths (95% CI 24, 77) per year in children with severe CHD were averted in 2012-2016 compared to what would have been the case had 2004-2008 mortality rates persisted. CONCLUSIONS: Nine out of 10 children with severe CHD in 2012-2016 survived to age five. The small improvement in survival over the study period was driven by increased survival in term children. Most children with severe CHD are reaching school age and may require additional support by schools and healthcare services.

Congenital diaphragmatic hernia subtypes: Comparing birth prevalence, occurrence by maternal age, and mortality in a national birth cohort.

BACKGROUND: Population-based administrative data have rarely been used to compare the birth prevalence, risk factors for occurrence, and mortality of congenital diaphragmatic hernia (CDH) subtypes. OBJECTIVES: We used a national birth cohort to identify CDH subtypes and compared their birth prevalence, relationship with maternal age after accounting for sociodemographic factors, and 1-year mortality rates. METHODS: Linked hospital admission and death records were used to identify isolated and complex CDH cases (involving additional anomalies) among singleton livebirths in England between 2002 and 2018. The prevalence of each CDH subtype per 10,000 livebirths was estimated overall and by infant, birth and maternal characteristics. The relationship between maternal age and each subtype relative to no CDH was examined using multivariable log-binomial regression to estimate risk ratios (RRs). One-year mortality rates were examined using Kaplan-Meier curves and the hazard ratio (HR) of complex versus isolated CDH was calculated using Cox regression. RESULTS: Among 9.5 million livebirths, we identified 1285 with isolated CDH and 1150 with complex CDH. The overall prevalence of isolated and complex CDH was 1.4 (95% confidence interval [CI] 1.3, 1.4) and 1.2 (95% CI 1.1, 1.3) per 10,000 livebirths, respectively. Only complex CDH was associated with maternal age. Compared with maternal age 25-34 years, complex CDH risk was elevated for maternal age < 20 years (RR 1.31, 95% CI 1.00, 1.72). Risk was highest for maternal age ≥ 40 years (RR 1.61, 95% CI 1.21, 2.15) although accounting for chromosomal anomalies attenuated the risk (RR 1.39, 95% CI 1.00, 1.92). The 1-year mortality rate for complex CDH (33.1%, 95% CI 30.5, 35.9) was slightly higher than for isolated CDH (29.7%, 95% CI 27.3, 32.3) (HR 1.10, 95% CI 0.96, 1.27). CONCLUSIONS: Mechanisms of occurrence differed between and within CDH subtypes and 1-year mortality of complex CDH was slightly higher than for isolated CDH.

Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: Population-based cohort study.

Background: Transition from paediatric to adult health care may disrupt continuity of care, and result in unmet health needs. We describe changes in planned and unplanned hospital admission rates before, during and after transition for young people with learning disability (LD), or autism spectrum disorders (ASD) indicated in hospital records, who are likely to have more complex health needs. Methods: We developed two mutually exclusive cohorts of young people with LD, and with ASD without LD, born between 1990 and 2001 in England using national hospital admission data. We determined the annual rate of change in planned and unplanned hospital admission rates before (age 10-15 years), during (16-18 years) and after (19-24 years) transition to adult care using multilevel negative binomial regression models, accounting for area-level deprivation, sex, birth year and presence of comorbidities. Findings: The cohorts included 51,291 young people with LD, and 46,270 autistic young people. Admission rates at ages 10-24 years old were higher for young people with LD (54 planned and 25 unplanned admissions per 100 person-years) than for autistic young people (17/100 and 16/100, respectively). For young people with LD, planned admission rates were highest and constant before transition (rate ratio [RR]: 0.99, 95% confidence interval [CI] 0.98-0.99), declined by 14% per year of age during (RR: 0.86, 95% CI: 0.85-0.88), and remained constant after transition (RR: 0.99, 95% CI: 0.99-1.00), mainly due to fewer admissions for non-surgical care, including respite care. Unplanned admission rates increased by 3% per year of age before (RR: 1.03, 95% CI: 1.02-1.03), remained constant during (RR: 1.01, 95% CI: 1.00-1.03) and increased by 3% per year after transition (RR: 1.03, 95% CI: 1.02-1.04). For autistic young people, planned admission rates increased before (RR: 1.06, 95% CI: 1.05-1.06), decreased during (RR: 0.95, 95% CI: 0.93-0.97), and increased after transition (RR: 1.05, 95%: 1.04-1.07). Unplanned admission rates increased most rapidly before (RR: 1.16, 95% CI: 1.15-1.17), remained constant during (RR: 1.01, 95% CI: 0.99-1.03), and increased moderately after transition (RR: 1.03, 95% CI: 1.02-1.04). Interpretation: Decreases in planned admission rates during transition were paralleled by small but consistent increases in unplanned admission rates with age for young people with LD and autistic young people. Decreases in non-surgical planned care during transition could reflect disruptions to continuity of planned/respite care or a shift towards provision of healthcare in primary care and community settings and non-hospital arrangements for respite care. Funding: National Institute for Health Research Policy Research Programme.

Leveraging Administrative Data to Better Understand and Address Child Maltreatment: A Scoping Review of Data Linkage Studies.

BACKGROUND: This scoping review aimed to overview studies that used administrative data linkage in the context of child maltreatment to improve our understanding of the value that data linkage may confer for policy, practice, and research. METHODS: We searched MEDLINE, Embase, PsycINFO, CINAHL, and ERIC electronic databases in June 2019 and May 2020 for studies that linked two or more datasets (at least one of which was administrative in nature) to study child maltreatment. We report findings with numerical and narrative summary. RESULTS: We included 121 studies, mainly from the United States or Australia and published in the past decade. Data came primarily from social services and health sectors, and linkage processes and data quality were often not described in sufficient detail to align with current reporting guidelines. Most studies were descriptive in nature and research questions addressed fell under eight themes: descriptive epidemiology, risk factors, outcomes, intergenerational transmission, predictive modelling, intervention/service evaluation, multi-sector involvement, and methodological considerations/advancements. CONCLUSIONS: Included studies demonstrated the wide variety of ways in which data linkage can contribute to the public health response to child maltreatment. However, how research using linked data can be translated into effective service development and monitoring, or targeting of interventions, is underexplored in terms of privacy protection, ethics and governance, data quality, and evidence of effectiveness.

Gestational age at birth, chronic conditions and school outcomes: a population-based data linkage study of children born in England.

INTRODUCTION: We aimed to generate evidence about child development measured through school attainment and provision of special educational needs (SEN) across the spectrum of gestational age, including for children born early term and >41 weeks of gestation, with and without chronic health conditions. METHODS: We used a national linked dataset of hospital and education records of children born in England between 1 September 2004 and 31 August 2005. We evaluated school attainment at Key Stage 1 (KS1; age 7) and Key Stage 2 (KS2; age 11) and any SEN by age 11. We stratified analyses by chronic health conditions up to age 2, and size-for-gestation, and calculated population attributable fractions (PAF). RESULTS: Of 306 717 children, 5.8% were born <37 weeks gestation and 7.0% had a chronic condition. The percentage of children not achieving the expected level at KS1 increased from 7.6% at 41 weeks, to 50.0% at 24 weeks of gestation. A similar pattern was seen at KS2. SEN ranged from 29.0% at 41 weeks to 82.6% at 24 weeks. Children born early term (37-38 weeks of gestation) had poorer outcomes than those born at 40 weeks; 3.2% of children with SEN were attributable to having a chronic condition compared with 2.0% attributable to preterm birth. CONCLUSIONS: Children born with early identified chronic conditions contribute more to the burden of poor school outcomes than preterm birth. Evaluation is needed of how early health characteristics can be used to improve preparation for education, before and at entry to school.

Characteristics of enrolment in an intensive home-visiting programme among eligible first-time adolescent mothers in England: a linked administrative data cohort study.

BACKGROUND: Intensive home visiting for adolescent mothers may help reduce health disparities. Given limited resources, such interventions need to be effectively targeted. We evaluated which mothers were enrolled in the Family Nurse Partnership (FNP), an intensive home-visiting service for first-time young mothers commissioned in >130 local authorities in England since 2007. METHODS: We created a population-based cohort of first-time mothers aged 13-19 years giving birth in English National Health Service hospitals between 1 April 2010 and 31 March 2017, using administrative hospital data linked with FNP programme, educational and social care data. Mothers living in a local authority with an active FNP site were eligible. We described variation in enrolment rates across sites, and identified maternal and FNP site characteristics associated with enrolment. RESULTS: Of 110 520 eligible mothers, 25 680 (23.2% (95% CI: 23.0% to 23.5%)) were enrolled. Enrolment rates varied substantially across 122 sites (range: 11%-68%), and areas with greater numbers of first-time adolescent mothers achieved lower enrolment rates. Mothers aged 13-15 years were most likely to be enrolled (52%). However, only 26% of adolescent mothers with markers of vulnerability (including living in the most deprived areas and ever having been looked after as a child) were enrolled. CONCLUSION: A substantial proportion of first-time adolescent mothers with vulnerability markers were not enrolled in FNP. Variation in enrolment across sites indicates insufficient commissioning of places that is not proportional to level of need, with mothers in areas with large numbers of other adolescent mothers least likely to receive support.

Child and family-focused interventions for child maltreatment and domestic abuse: development of core outcome sets.

BACKGROUND: The current evidence for child maltreatment (CM) and domestic violence and abuse (DVA) interventions is limited by the diversity of outcomes evaluated and the variety of measures used. The result is studies that are difficult to compare and lack focus on outcomes reflecting service user or provider priorities. OBJECTIVE: To develop core outcome sets (COSs) for evaluations of child and family-focused interventions for: (1) CM and (2) DVA. DESIGN: We conducted a two-stage consensus process. Stage 1: a long list of candidate outcomes across CM and DVA was developed through rapid systematic reviews of intervention studies, qualitative and grey literature; stakeholder workshops; survivor interviews. Stage 2: three-panel, three-round e-Delphi surveys for CM and DVA with consensus meetings to agree with the final COSs. PARTICIPANTS: 287 stakeholders participated in at least one stage of the process (ie, either CM or DVA COS development): workshops (n=76), two e-Delphi surveys (n=170) and consensus meetings (n=43). Stakeholders included CM and DVA survivors, practitioners, commissioners, policymakers and researchers. RESULTS: Stage 1 identified 335 outcomes categorised into 9 areas and 39 domains. Following stage 2, the final five outcomes included in the CM-COS were: child emotional health and well-being; child's trusted relationships; feelings of safety; child abuse and neglect; service harms. The final five outcomes in the DVA-COS were: child emotional health and well-being; caregiver emotional health and well-being; family relationships; freedom to go about daily life; feelings of safety. CONCLUSIONS: We developed two COSs for CM and DVA with two common outcomes (child emotional health and well-being; feelings of safety). The COSs reflect shared priorities among service users, providers and researchers. Use of these COSs across trials and service evaluations for children and families affected by CM and DVA will make outcome selection more consistent and help harmonise research and practice.