Aims Enrolling children into several trials could increase recruitment and lead to quicker delivery of optimal care in paediatric intensive care units (PICU). We evaluated decisions taken by clinicians and parents in PICU on co-enrolment for two large pragmatic trials: the CATCH trial (CATheters in CHildren) comparing impregnated with standard central venous catheters (CVCs) for reducing bloodstream infection in PICU and the CHIP trial comparing tight versus standard control of hyperglycaemia. Methods We recorded the period of trial overlap for all PICUs taking part in both CATCH and CHiP and reasons why clinicians decided to co-enrol children or not into both studies. We examined parental decisions on co-enrolment by measuring recruitment rates and reasons for declining consent. Results Five PICUs recruited for CATCH and CHiP during the same period (an additional four opened CATCH after having closed CHiP). Of these five, three declined co-enrolment (one of which delayed recruiting elective patients for CATCH whilst CHiP was running), due to concerns about jeopardising CHiP recruitment, asking too much of parents, overwhelming amounts of information to explain to parents for two trials and a policy against co-enrolment. Two units co-enrolled in order to maximise recruitment to both trials. At the first unit, 35 parents were approached for both trials. 17/35 consented to both; 13/35 consented to one trial only; 5/35 declined both. Consent rates during co-enrolment were 29/35 (82%) and 18/35 (51%) for CATCH and CHiP respectively compared with 78% and 51% respectively for those approached for a single trial within this PICU. The second unit did not record data on approaches or refusals, but successfully co-enrolled one child. Conclusions Co-enrolment did not appear to jeopardise recruitment or overwhelm parents. Strategies for seeking consent for multiple trials need to be developed and should include how to combine information for parents and patients.
Schools have a statutory duty to support pupils with medical conditions in England, but limited evidence exists on how support is managed in practice. This study explores young people's, caregivers', and school staff's experiences of access to health and wellbeing support in state secondary schools for pupils with chronic health conditions. We used an online qualitative survey design: one for young people or caregivers, and one for staff. Data was analysed using framework analysis, applying candidacy theory. Twelve young people, 33 caregivers, and 18 secondary school staff responded to the survey. Participants described highly varied offers of health and wellbeing support, with caregivers and young people often unaware of what support schools could feasibly provide. Participants highlighted communication gaps and a lack of collaborative work between primary or secondary healthcare and schools. Many caregivers and young people reported that staff had insufficient understanding of their condition(s), had not trusted or believed them when they had explained their health needs, or had left them out of conversations about support. School staff also noted communication difficulties with caregivers. Many caregivers and staff described aspects of the secondary school setting that prohibited inclusivity including insufficient staff time, high pupil numbers, a focus on national attainment measures, and attendance targets. The support options that young people with chronic conditions can feasibly be offered should be clarified in government guidance. Further research is needed on the prevalence/utility of individual healthcare plans and on procedures to ensure that pupils with medical conditions are justly supported.
Policies and thresholds vary for placing children into out-of-home care (OHC) at different ages. Evidence is lacking that quantifies the risk of entering OHC by age, and how this varies over time and between countries. We determined the age-specific cumulative incidence of ever entering OHC during childhood in Denmark and in eight local authorities in England. We used administrative data for any form of OHC (except respite care) provided by children's social services in Denmark and England from 1992 to 2008. Using life tables and national population estimates, we calculated the cumulative incidence of entry into OHC by year of age for cohorts born in 1992–1994 through to 2006–2008. The cumulative incidence of entry into OHC decreased over time in Denmark and increased in England at all ages. Cumulative incidence of OHC in the first year of life was similar in Denmark and England for infants born in 1992–1994 (Denmark 2.83/1,000, England 2.89/1,000), but infants born in 2007–2008 were nearly three times as likely to enter OHC before their first birthday in England (4.50/1,000) than in Denmark (1.61/1,000). Entry into OHC during adolescence was more common in Denmark than in England so that by 16 years old the cumulative incidence of ever entering OHC during childhood was twice as high in Denmark (33.83/1,000) as in England (15.62/1,000). Diverging trends over time in the use of OHC in Denmark and England are likely to reflect changing policies in the two countries.
Background: We evaluated the effectiveness of the Family Nurse Partnership (FNP), an intensive home visiting programme for teenage mothers. Methods: We created a linked cohort of >130,000 mothers aged 13-19 with live births between April 2010 and March 2019, using administrative data from health (Hospital Episode Statistics), education and children’s social care (National Pupil Database). Using propensity score matching, we compared indicators of child maltreatment, health and development outcomes, and maternal hospital utilisation and educational outcomes up to seven years following birth.Findings: We found no evidence of an association between FNP and indicators of child maltreatment, except for an increased rate of unplanned admissions for maltreatment/injury-related diagnoses up to age two for children born to FNP mothers (6.6% versus 5.7%, relative risk [RR] 1.15; 95% Confidence Interval [CI] 1.07, 1.24). There was weak evidence that children born to FNP mothers were more likely to achieve a Good Level of Development at age 5 (57.5% versus 55.4%, RR 1.05; 95% CI 1.00, 1.09). FNP mothers were less likely to have a subsequent delivery within 18 months of the index birth (8.4% versus 9.3%, RR 0.92; 95% CI 0.88, 0.97).Interpretation: Our study supports findings from previous evaluations of FNP showing no evidence of benefit for child maltreatment or health outcomes measured in administrative data. Bias by indication, and variation in the intervention and usual care, may have limited our ability to detect effects. Future evaluations should capture more information on maternal risk factors, and additional outcomes relating to maternal/child wellbeing.Funding: NIHR - This study was supported by funding from NIHR Health Services Delivery & Research (17/99/19), and the authors were in part supported by the NIHR through the Great Ormond Street Hospital Biomedical Research Centre and the NIHR Children and Families Policy Research Unit and Senior Investigator award for RG.l conflict of interest.Declaration of Interest: The authors state no conflicts of interests.Ethics Approval: Support for this study has been obtained from Nottingham Research Ethics committee (ref: 18/EM/0014), from the Department for Education (ref DR190430.02) and the Confidentiality Advisory Group (ref 18/CAG/0013). A Study Steering Committee oversaw the study and ensured it was conducted to rigorous standards. Support for the qualitative study was obtained from the University of Kent.
ObjectivesAll children have a right to education, but research indicates that those receiving children’s social care (CSC) services are at increased risk of non-enrolment in school, including through off-rolling (illegal exclusion). We aimed to use administrative data to estimate the association between CSC history and non-enrolment in secondary school. ApproachUsing the National Pupil Database (data on all English state school enrolments), we identified a cohort of 1,059,781 pupils aged 11 in 2011 and 2012. Children were categorised as having a history of being children in need (CiN), on child protection plans (CPPs) or looked after (CLA) using linked data from CSC services. We estimated the proportion of children not enrolled across ages 12 to 16 by CSC history. We then assessed with regression modelling the association between CSC history and non-enrolment in years 10/11. We also examined variation in overall non-enrolment rates between local authorities and regions. ResultsOf children without CSC history, 3.8% had 1 or more non-enrolments across ages 12 to 16. This proportion was higher among children with a history of being CiN (8.1%), on a CPP (9.4%) or being CLA (10.4%). The odds of non-enrolment in years 10/11 were higher among those with CLA history vs non-exposed peers (OR 4.76, 95% CI 4.49-5.05) as well as in those with CPP (3.60, 3.39-3.81) and CiN history (2.53, 2.49-2.58). History of special educational needs and disability (SEND) further increased non-enrolment odds. These associations and interactions persisted after adjusting for confounders. Non-enrolment rates were highest in the London region and varied significantly between local authorities. ConclusionOur findings show that children with CSC history (especially those with SEND) are more likely to be non-enrolled in secondary school than other children. Work is needed to understand the non-enrolment mechanisms, which may include illegal off-rolling and other exclusionary practices, to improve the education of children with CSC history.
Over the last century, the primary burden of disease in children and young people has shifted from infectious diseases towards chronic conditions.1 Improvements in neonatal and paediatric care for chronic conditions mean more children with previously lethal conditions are now surviving into adulthood.2 ,3 Depending on the definition used, 13–27% of children are affected by chronic conditions.4 Chronic conditions affect many aspects of the lives of children with consequences that endure into adulthood.5
Quality of healthcare for children with chronic conditions is a research and policy priority, but comes at a cost. In the USA, it is estimated that children with serious, complex chronic conditions account for 10% of admissions, but 41% of hospital charges.6 As life expectancy increases, these costs extend into adulthood. Better quality of healthcare during childhood can improve educational achievement and employment prospects and reduce disability and dependency in adulthood. To find out whether improvements in healthcare are indeed improving long-term outcomes for children with chronic conditions and their families, we need data.
In this article, we review how administrative health data can be used to evaluate the frequency of healthcare utilisation by children affected by chronic conditions and to evaluate outcomes. Administrative health data are collected routinely for non-research purposes, including for patient or service management or financial reimbursement. We focus specifically on hospital administrative databases and vital registration systems. The evidence generated by administrative hospital data on the burden and type of chronic conditions can help with planning and design of services and can be used to determine (the effects of) changes in practice of policy. We also discuss how studies using administrative health databases could be extended through data linkage, to other sectors, such as education and social care, to measure outcomes in adulthood, and to data …
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