Educational attainment among primary school children with neurodisability: A population-based cohort study using linked education and health data from England

Objective To support integrated health and education approaches by assessing differences in educational attainment between primary school children with and without a range of neurodisabilities. Design Population-based cohort study.

We derived a national birth cohort of 2,351,589 children born in England between 01/09/2003-31/08/2008 enrolled in state-funded primary schools in Reception (age 4-5) using linked health and education records. Neurodisability was identified from hospital admission records. We described differences in primary school educational attainment for children with and without neurodisability.

2.2% of children had a recorded neurodisability before starting Reception. These children consistently underperformed in national assessments, with fewer than half meeting nationally expected levels in Maths and English at every time point. By the end of primary school (age 10/11), 31% of children with neurodisability did not participate in national assessments despite being enrolled in school. Among children with neurodisability, educational attainment was lowest for children with Down syndrome and highest for children with perinatal conditions. Implications Substantial attainment gaps exist between children with and without neurodisability. By the end of primary school, many children with neurodisability are excluded from being formally assessed, highlighting the need for more personalised, functional outcome measures to ensure the meaningful evaluation of their educational development. KEY MESSAGES What is already known on this topic Children with neurodisability face functional challenges that can disrupt their success in school. There is limited understanding of their participation in national assessments and academic attainment throughout primary school on a population level in England. What this study adds: Large attainment gaps exist between children with neurodisability and their peers. Most (70% of) children with neurodisability who enter Year 1 are not ‘school ready’. A third of children with neurodisability are excluded from assessments at the end of primary school despite being enrolled in school. How this study might affect research, practice or policy: Health records can identify children with neurodisability early, supporting timely special educational needs and disability (SEND) assessments before school starts. Joint support provided by health and education systems may reduce the burden of neurodisability on school outcomes. Competing Interest Statement The authors have declared no competing interest. Clinical Protocols https://openresearch.nihr.ac.uk/articles/4-28#:~:text=Neurodisability%20includes%20a%20range%20of,need%20extra%20support%20with%20learning. Funding Statement This study is part of the HOPE (Health Outcomes of young People in Education) research programme, which is funded by the National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research Programme (grant number NIHR202025). RG is supported by a NIHR Senior Investigator award. This research was supported by Health Data Research UK (grant number LOND1), which is funded by the Medical Research Council and eight other funders. ECHILD is supported by Administrative Data Research UK and the Economic and Social Research Council (part of UK Research and Innovation) (grant numbers ES/V000977/1, ES/X003663/1, ES/X000427/1). Research at UCL Great Ormond Street Institute of Child Health is supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Permissions to use linked, de-identified data from Hospital Episode Statistics and the National Pupil Database were granted by the Department for Education (DR200604.02B) and NHS Digital (DARS-NIC-381972). Ethical approval for the ECHILD project was granted by the National Research Ethics Service (17/LO/1494), NHS Health Research Authority Research Ethics Committee (20/EE/0180) and UCL Great Ormond Street Institute of Child Healths Joint Research and Development Office (20PE06). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability The ECHILD database is made available for free for approved research based in the UK, via the ONS Secure Research Service. Enquiries to access the ECHILD database can be made by emailing ich.echild{at}ucl.ac.uk. Researchers will need to be approved and submit a successful application to the ECHILD Data Access Committee and ONS Research Accreditation Panel to access the data with strict statistical disclosure controls of all outputs of analyses.