Planned and unplanned hospital admissions and health-related school absence rates in children with neurodisability: Protocol for a population-based study using linked education and hospital data from England.

Background: Neurodisability describes a broad set of conditions affecting the brain and nervous system which result in functional limitations. Children with neurodisability have more hospital admissions than their peers without neurodisability and higher rates of school absence. However, longitudinal evidence comparing rates of hospital admission and school absence in children with neurodisability to peers without neurodisability throughout school is limited, as is understanding about whether differences are greatest for planned care (e.g., scheduled appointments) or unplanned care. This study will describe rates of planned and unplanned hospital admissions and school absence due to illness and medical reasons throughout primary school (Reception to Year 6, ages 4 to 11 in England) for children with neurodisability and all other children, using linked individual-level health and education data. Methods: We will use the ECHILD (Education and Child Insights from Linked Data) database, which links educational and health records across England. We will define a primary school cohort of children who were born in National Health Service-funded hospitals in England between 1 st September 2003 and 31 st August 2008, and who were enrolled in Reception (age 4/5) at state-funded schools. We will use hospital admissions records to identify children who have recorded indicators of neurodisability from birth up to the end of primary school (Year 6, age 10/11). Results: We will describe rates of planned and unplanned hospital admissions and health-related school absence for three groups of children: those with a neurodisability indicator first recorded before beginning primary school, those with neurodisability first recorded during primary school, and those without a record of neurodisability before end of primary school. Conclusions: We will further explore whether differences between these group vary across primary school years and by socioeconomic and demographic characteristics.

Neurodisability encompasses a range of health conditions which affect the brain and nervous system and result in difficulties with everyday activities, including learning. Children with neurodisability are more likely to be admitted to hospital and spend longer periods of time in hospital than children without neurodisability. They are also more likely to be absent from school. Yet, in England, these is a lack of evidence comparing admissions and absence rates in children with and without neurodisability throughout their school years. Evidence is also lacking on whether differences are greatest for planned care (e.g., scheduled appointments) or unplanned care. We will use hospital and education records from state-funded hospitals and schools in England to describe rates of hospital admission and school absences for children with and without neurodisability during their primary school years.

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.

Early special educational needs provision and its impact on unplanned hospital utilisation and school absences in children with isolated cleft lip and/or palate: a demonstration target trial emulation study protocol using ECHILD.

Background: Special educational needs (SEN) provision is designed to help pupils with additional educational, behavioural or health needs; for example, pupils with cleft lip and/or palate may be offered SEN provision to improve their speech and language skills. Our aim is to contribute to the literature and assess the impact of SEN provision on health and educational outcomes for a well-defined population. Methods: We will use the ECHILD database, which links educational and health records across England. Our target population consists of children identified within ECHILD to have a specific congenital anomaly: isolated cleft lip and/or palate. We will apply a trial emulation framework to reduce biases in design and analysis of observational data to investigate the causal impact of SEN provision (including none) by the start of compulsory education (Year One - age five year on entry) on the number of unplanned hospital utilisation and school absences by the end of primary education (Year Six - age ten/eleven). We will use propensity score-based estimators (inverse probability weighting (IPW) and IPW regression adjustment IPW) to compare categories of SEN provision in terms of these outcomes and to triangulate results obtained using complementary estimation methods (Naïve estimator, multivariable regression, parametric g-formula, and if possible, instrumental variables), targeting a variety of causal contrasts (average treatment effect/in the treated/in the not treated) of SEN provision. Conclusions: This study will evaluate the impact of reasonable adjustments at the start of compulsory education on health and educational outcomes in the isolated cleft lip and palate population by triangulating complementary methods under a target-trial framework.

Children born with cleft lip and/or palate have been shown to have lower academic performance compared to the general population and have also been shown to have higher attendances to hospitals. To support children with such health and education needs, special educational needs provisions such as teaching assistants can be provided. The aim of this study is to understand whether children with cleft lip and/or palate were better off on average in receiving special education needs at the start of primary school in terms of hospital usage and school absences.

Impact of special educational needs provision on hospital utilisation, school attainment and absences for children in English primary schools stratified by gestational age at birth: A target trial emulation study protocol.

Introduction: One third of children in English primary schools have additional learning support called special educational needs (SEN) provision, but children born preterm are more likely to have SEN than those born at term. We aim to assess the impact of SEN provision on health and education outcomes in children grouped by gestational age at birth. Methods: We will analyse linked administrative data for England using the Education and Child Health Insights from Linked Data (ECHILD) database. A target trial emulation approach will be used to specify data extraction from ECHILD, comparisons of interest and our analysis plan. Our target population is all children enrolled in year one of state-funded primary school in England who were born in an NHS hospital in England between 2003 and 2008, grouped by gestational age at birth (extremely preterm (24-<28 weeks), very preterm (28-<32 weeks), moderately preterm (32-<34 weeks), late preterm (34-<37 weeks) and full term (37-<42 weeks). The intervention of interest will comprise categories of SEN provision (including none) during year one (age five/six). The outcomes of interest are rates of unplanned hospital utilisation, educational attainment, and absences by the end of primary school education (year six, age 11). We will triangulate results from complementary estimation methods including the naïve estimator, multivariable regression, g-formula, inverse probability weighting, inverse probability weighting with regression adjustment and instrumental variables, along with a variety for a variety of causal contrasts (average treatment effect, overall, and on the treated/not treated). Ethics and dissemination: We have existing research ethics approval for analyses of the ECHILD database described in this protocol. We will disseminate our findings to diverse audiences (academics, relevant government departments, service users and providers) through seminars, peer-reviewed publications, short briefing reports and infographics for non-academics (published on the study website).

One third of all children need extra help with learning in school, such as support from a teaching assistant. Children born preterm are more likely to need extra help compared to those born at term. In England, this help is called special educational needs (SEN) provision. The aim of this study is to find out whether special educational need provision affects education and health outcomes. We will use information collected by hospitals and schools for all children who were born in England between 2003 and 2008. We will compare those with who received and did not receive extra help in school who have a similar gestational age at birth.

Estimating disease burden using national linked electronic health records: a study using an English population-based cohort.

Background: Electronic health records (EHRs) have the potential to be used to produce detailed disease burden estimates. In this study we created disease estimates using national EHR for three high burden conditions, compared estimates between linked and unlinked datasets and produced stratified estimates by age, sex, ethnicity, socio-economic deprivation and geographical region. Methods: EHRs containing primary care (Clinical Practice Research Datalink), secondary care (Hospital Episode Statistics) and mortality records (Office for National Statistics) were used. We used existing disease phenotyping algorithms to identify cases of cancer (breast, lung, colorectal and prostate), type 1 and 2 diabetes, and lower back pain. We calculated age-standardised incidence of first cancer, point prevalence for diabetes, and primary care consultation prevalence for low back pain. Results: 7.2 million people contributing 45.3 million person-years of active follow-up between 2000-2014 were included. CPRD-HES combined and CPRD-HES-ONS combined lung and bowel cancer incidence estimates by sex were similar to cancer registry estimates. Linked CPRD-HES estimates for combined Type 1 and Type 2 diabetes were consistently higher than those of CPRD alone, with the difference steadily increasing over time from 0.26% (2.99% for CPRD-HES vs. 2.73 for CPRD) in 2002 to 0.58% (6.17% vs. 5.59) in 2013. Low back pain prevalence was highest in the most deprived quintile and when compared to the least deprived quintile the difference in prevalence increased over time between 2000 and 2013, with the largest difference of 27% (558.70 per 10,000 people vs 438.20) in 2013. Conclusions: We use national EHRs to produce estimates of burden of disease to produce detailed estimates by deprivation, ethnicity and geographical region. National EHRs have the potential to improve disease burden estimates at a local and global level and may serve as more automated, timely and precise inputs for policy making and global burden of disease estimation.

Treatment for congenital toxoplasmosis: finding out what works

Evidence for the effectiveness of prenatal or postnatal treatment for congenital toxoplasmosis will be critical to guide policy about prenatal and neonatal screening over the next 10 years, let alone the next 100. Randomised controlled trials are needed to address questions about treatment effectiveness, although cohort studies are also needed to provide information on prognosis, especially disability. Nowhere are such studies needed more than in South America where congenital toxoplasmosis is a major public health problem.

Burden and consequences of child maltreatment in high-income countries

Child maltreatment remains a major public-health and social-welfare problem in high-income countries. Every year, about 4—16% of children are physically abused and one in ten is neglected or psychologically abused. During childhood, between 5% and 10% of girls and up to 5% of boys are exposed to penetrative sexual abuse, and up to three times this number are exposed to any type of sexual abuse. However, official rates for substantiated child maltreatment indicate less than a tenth of this burden. Exposure to multiple types and repeated episodes of maltreatment is associated with increased risks of severe maltreatment and psychological consequences. Child maltreatment substantially contributes to child mortality and morbidity and has longlasting effects on mental health, drug and alcohol misuse (especially in girls), risky sexual behaviour, obesity, and criminal behaviour, which persist into adulthood. Neglect is at least as damaging as physical or sexual abuse in the long term but has received the least scientific and public attention. The high burden and serious and long-term consequences of child maltreatment warrant increased investment in preventive and therapeutic strategies from early childhood

Host genetic and epigenetic factors in toxoplasmosis

Analysing human genetic variation provides a powerful tool in understanding risk factors for disease. Toxoplasma gondii acquired by the mother can be transmitted to the fetus. Infants with the most severe clinical signs in brain and eye are those infected early in pregnancy when fetal immunity is least well developed. Genetic analysis could provide unique insight into events in utero that are otherwise difficult to determine. We tested the hypothesis that propensity for T. gondii to cause eye disease is associated with genes previously implicated in congenital or juvenile onset ocular disease. Using mother-child pairs from Europe (EMSCOT) and child/parent trios from North America (NCCCTS), we demonstrated that ocular and brain disease in congenital toxoplasmosis associate with polymorphisms in ABCA4 encoding ATP-binding cassette transporter, subfamily A, member 4 previously associated with juvenile onset retinal dystrophies including Stargardt's disease. Polymorphisms at COL2A1 encoding type II collagen, previously associated with Stickler syndrome, associated only with ocular disease in congenital toxoplasmosis. Experimental studies showed that both ABCA4 and COL2A1 show isoform-specific epigenetic modifications consistent with imprinting, which provided an explanation for the patterns of inheritance observed. These genetic and epigenetic risk factors provide unique insight into molecular pathways in the pathogenesis of disease.

Recognising and responding to child maltreatment

Professionals in child health, primary care, mental health, schools, social services, and law-enforcement services all contribute to the recognition of and response to child maltreatment. In all sectors, children suspected of being maltreated are under-reported to child-protection agencies. Lack of awareness of the signs of child maltreatment and processes for reporting to child-protection agencies, and a perception that reporting might do more harm than good, are among the reasons for not reporting. Strategies to improve recognition, mainly used in paediatric practice, include training, use of questionnaires for asking children and parents about maltreatment, and evidence-based guidelines for who should be assessed by child-protection specialists. Internationally, studies suggest that policies emphasising substantiation of maltreatment without concomitant attention to welfare needs lead to less service provision for maltreated children than do those in systems for which child maltreatment is part of a broad child and family welfare response.

Measuring and monitoring national prevalence of child maltreatment: a practical handbook

This handbook has been developed to support the creation of a surveillance system to measure and monitor child maltreatment prevalence across European countries. Implementation of a surveillance system will be an essential factor in realizing Investing in children, the European child maltreatment prevention action plan 2015–2020. It describes the processes involved in setting up child maltreatment surveillance systems and presents recommendations on issues such as selection of data collection method, sampling of respondents, choice of instrument to measure abuse and ethical considerations. The handbook suggests community-based surveys on prevalence as the most appropriate method in setting up a child maltreatment surveillance system and proposes the use of one of three established child maltreatment questionnaires, based on the results of a rapid systematic review of child abuse measures. The Short Child Maltreatment Questionnaire is introduced for countries needing a brief measure. Ideally, community-based surveys should be conducted with nationally representative samples of approximately 1500 students in each age group and administered via schools. The use of self-report methods – paper-based or tablet/mobile-phone self-administered questionnaires – is advised. Questions should capture previous-year and lifetime prevalence of child maltreatment. Monitoring prevalence rates over time requires surveys to be conducted at repeated time points. It is proposed that surveys be administered every four to seven years. Methods of data collection that do not involve children are presented for countries unable to conduct surveys with children. Finally, ethical considerations in conducting surveys on child maltreatment are discussed.

European report on preventing child maltreatment

Child maltreatment is a leading cause of health inequality, with the socioeconomically disadvantaged more at risk. It worsens inequity and perpetuates social injustice because of its far-reaching health and development consequences. Inspite of child maltreatment being a priority in most countries in the WHO European Region, few have devoted adequate resources and attention to its prevention. This report outlines the high burden of child maltreatment, its causes and consequences and the cost−effectiveness of prevention programmes. It makes compelling arguments for increased investment in prevention and for mainstreaming prevention objectives into other areas of health and social policy, reflecting the whole-of-society approach promoted by Health 2020 and the need for increased intersectoral working and coordination. The report offers policy-makers a preventive approach based on strong evidence and shared experience to support them in responding to increased demands from the public to tackle child maltreatment. Prevention programmes that stop maltreatment from occurring in the first place and reduce children’s exposure to adversity have wide-ranging public health and societal benefits.