{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T02:03:31Z","timestamp":1783649011222,"version":"3.55.0"},"reference-count":46,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2025,3,18]],"date-time":"2025-03-18T00:00:00Z","timestamp":1742256000000},"content-version":"unspecified","delay-in-days":17,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100009130","name":"Programme Development Grants","doi-asserted-by":"publisher","award":["NIHR206946"],"award-info":[{"award-number":["NIHR206946"]}],"id":[{"id":"10.13039\/501100009130","id-type":"DOI","asserted-by":"publisher"}]},{"name":"ADR UK","award":["ES\/V000977\/1"],"award-info":[{"award-number":["ES\/V000977\/1"]}]},{"name":"ADR UK","award":["ES\/X000427\/1"],"award-info":[{"award-number":["ES\/X000427\/1"]}]},{"name":"ADR UK","award":["ES\/X003663\/1"],"award-info":[{"award-number":["ES\/X003663\/1"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2025,2,14]]},"published-print":{"date-parts":[[2025,3]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Children and young people with neurodisability (conditions affecting the brain or nervous system, creating functional impairment, eg, autism, learning disabilities, epilepsy, cerebral palsy or attention-deficit\/hyperactivity disorder) have more complex health and educational needs than their peers, contributing to higher healthcare use and special educational needs (SEN) provision. To guide policy and improve services, evidence is needed on how health and education support and outcomes change with age for adolescents with and without neurodisability.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>Using the Education and Child Health Insights from Linked Data (ECHILD) database, which links health and education data across England, we will follow adolescents from the start of secondary school (Year 7) into early adulthood. We will classify children with and without neurodisability recorded in hospital and education records before Year 7, compare their sociodemographic characteristics and describe trends in health and educational outcomes throughout secondary school. We will estimate rates of planned and unplanned healthcare contacts by year of age (11\u201322 years old), and we will examine changes in trends before, during and after transition to adult healthcare. We will also estimate the proportion of adolescents with school-recorded SEN provision and rates of school absences and exclusions by year of age (11\u201315 years old) for the two groups. We will explore variation in outcomes by neurodisability subgroup and sociodemographic characteristics and contextualise the findings using existing interview and survey data from children, young people and parents\/carers generated in the Health Outcomes of young People throughout Education (HOPE) research programme.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>Ethics approval for analyses of the ECHILD database has been granted previously (20\/EE\/0180). Findings will be shared with academics, policymakers and stakeholders, and published in open-access journals. Code and metadata will be shared in the ECHILD GitHub repository.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2025-100276","type":"journal-article","created":{"date-parts":[[2025,3,21]],"date-time":"2025-03-21T05:02:23Z","timestamp":1742533343000},"page":"e100276","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":6,"title":["Health and education outcomes from adolescence to adulthood for young people with neurodisability and their peers: protocol for a population-based cohort study using linked hospital and education data from England"],"prefix":"10.1136","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-2017-9380","authenticated-orcid":false,"given":"Louise","family":"Macaulay","sequence":"first","affiliation":[{"name":"Great Ormond Street Institute of Child Health, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Saxton","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, University of Cambridge, Cambridge, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5295-4904","authenticated-orcid":false,"given":"Tamsin","family":"Ford","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, University of Cambridge, Cambridge, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stuart","family":"Logan","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration for the Southwest, University of Exeter Medical School, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3418-2856","authenticated-orcid":false,"given":"Katie","family":"Harron","sequence":"additional","affiliation":[{"name":"Great Ormond Street Institute of Child Health, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth","family":"Gilbert","sequence":"additional","affiliation":[{"name":"Great Ormond Street Institute of Child Health, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1035-1448","authenticated-orcid":false,"given":"Ania","family":"Zylbersztejn","sequence":"additional","affiliation":[{"name":"Great Ormond Street Institute of Child Health, University College London, London, UK"},{"name":"NIHR Great Ormond Street Hospital Biomedical Research Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2025,3,18]]},"reference":[{"key":"2025121515113950000_15.3.e100276.1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12218"},{"key":"2025121515113950000_15.3.e100276.2","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13557"},{"key":"2025121515113950000_15.3.e100276.3","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1111\/dmcn.14536","article-title":"Healthcare use by children and young adults with cerebral palsy","volume":"63","author":"Carter","year":"2021","journal-title":"Dev Med Child Neurol"},{"key":"2025121515113950000_15.3.e100276.4","doi-asserted-by":"crossref","DOI":"10.1001\/jamapediatrics.2017.0691","article-title":"Educational and Health Outcomes of Children Treated for Attention-Deficit\/Hyperactivity Disorder","volume":"171","author":"Fleming","year":"2017","journal-title":"JAMA Pediatr"},{"key":"2025121515113950000_15.3.e100276.5","doi-asserted-by":"crossref","DOI":"10.1186\/s12889-019-6888-9","article-title":"Educational and health outcomes of children and adolescents receiving antiepileptic medication: Scotland-wide record linkage study of 766 244 schoolchildren","volume":"19","author":"Fleming","year":"2019","journal-title":"BMC Public Health"},{"key":"2025121515113950000_15.3.e100276.6","doi-asserted-by":"crossref","DOI":"10.1186\/s12982-017-0059-1","article-title":"Do children with neurological disabilities use more inpatient resources: an observational study","volume":"14","author":"Yuan","year":"2017","journal-title":"Emerg Themes Epidemiol"},{"key":"2025121515113950000_15.3.e100276.7","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-0175"},{"key":"2025121515113950000_15.3.e100276.8","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2021-050905","article-title":"Trends in Health Care Use and Spending for Young Children With Neurologic Impairment","volume":"149","author":"Bayer","year":"2022","journal-title":"Pediatrics"},{"key":"2025121515113950000_15.3.e100276.9","unstructured":"The National Confidential Enquiry into Patient Outcome and Death . Each and Every Need London, 2018. Available: https:\/\/www.ncepod.org.uk\/2018cn.html"},{"key":"2025121515113950000_15.3.e100276.10","doi-asserted-by":"publisher","DOI":"10.1111\/jan.13985"},{"key":"2025121515113950000_15.3.e100276.11","doi-asserted-by":"crossref","first-page":"1429","DOI":"10.1111\/hsc.13198","article-title":"Experiences of transition from children\u2019s to adult\u2019s healthcare services for young people with a neurodevelopmental condition","volume":"29","author":"Shanahan","year":"2021","journal-title":"Health Soc Care Community"},{"key":"2025121515113950000_15.3.e100276.12","doi-asserted-by":"crossref","DOI":"10.1016\/j.lanepe.2022.100531","article-title":"Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: Population-based cohort study","volume":"24","author":"Zylbersztejn","year":"2023","journal-title":"Lancet Reg Health Eur"},{"key":"2025121515113950000_15.3.e100276.13","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2017-021015","article-title":"Emergency admissions and long-term conditions during transition from paediatric to adult care: a cross-sectional study using Hospital Episode Statistics data","volume":"8","author":"Wijlaars","year":"2018","journal-title":"BMJ Open"},{"key":"2025121515113950000_15.3.e100276.14","doi-asserted-by":"crossref","first-page":"1458","DOI":"10.1038\/s41390-022-01975-3","article-title":"Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions","volume":"92","author":"Jarvis","year":"2022","journal-title":"Pediatr Res"},{"key":"2025121515113950000_15.3.e100276.15","doi-asserted-by":"publisher","DOI":"10.1016\/S2215-0366(21)00367-9"},{"key":"2025121515113950000_15.3.e100276.16","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2023-072531","article-title":"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","volume":"13","author":"Zylbersztejn","year":"2023","journal-title":"BMJ Open"},{"key":"2025121515113950000_15.3.e100276.17","unstructured":"Department for Education. Special educational needs and disability code of practice: 0 to 25 years, 2015. Available: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/398815\/SEND_Code_of_Practice_January_2015.pdf"},{"key":"2025121515113950000_15.3.e100276.18","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1003290","article-title":"Neurodevelopmental multimorbidity and educational outcomes of Scottish schoolchildren: A population-based record linkage cohort study","volume":"17","author":"Fleming","year":"2020","journal-title":"PLoS Med"},{"key":"2025121515113950000_15.3.e100276.19","doi-asserted-by":"crossref","first-page":"1380","DOI":"10.1093\/ije\/dyaa002","article-title":"Educational and health outcomes of children and adolescents receiving antidepressant medication: Scotland-wide retrospective record linkage cohort study of 766 237 schoolchildren","volume":"49","author":"Fleming","year":"2020","journal-title":"Int J Epidemiol"},{"key":"2025121515113950000_15.3.e100276.20","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1108\/TLDR-07-2018-0021","article-title":"School absences and exclusions experienced by children with learning disabilities and autistic children in 2016\/17 in England","volume":"23","author":"Hatton","year":"2018","journal-title":"TLDR"},{"key":"2025121515113950000_15.3.e100276.21","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1080\/08856257.2022.2059631","article-title":"How does the association between special education need and absence vary overtime and across special education need types?","volume":"38","author":"Tanya Lereya","year":"2023","journal-title":"Eur J Spec Needs Educ"},{"key":"2025121515113950000_15.3.e100276.22","first-page":"1","article-title":"Chronic School Absenteeism Among Children With Selected Developmental Disabilities: National Health Interview Survey, 2014-2016","volume":"Number 118","author":"Black","year":"2018","journal-title":"Natl Health Stat Report"},{"key":"2025121515113950000_15.3.e100276.23","doi-asserted-by":"crossref","first-page":"91","DOI":"10.1016\/j.seizure.2022.05.014","article-title":"The impact of childhood epilepsy on academic performance: A population-based matched cohort study","volume":"99","author":"Lystad","year":"2022","journal-title":"Seizure: European Journal of Epilepsy"},{"key":"2025121515113950000_15.3.e100276.24","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1111\/dmcn.14014","article-title":"Education disparities in young people with and without neurodisabilities","volume":"61","author":"Sentenac","year":"2019","journal-title":"Dev Med Child Neurol"},{"key":"2025121515113950000_15.3.e100276.25","doi-asserted-by":"crossref","DOI":"10.1186\/s12889-021-10538-w","article-title":"Impact of growing up with somatic long-term health challenges on school completion, NEET status and disability pension: a population-based longitudinal study","volume":"21","author":"Rasalingam","year":"2021","journal-title":"BMC Public Health"},{"key":"2025121515113950000_15.3.e100276.26","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(12)60531-5"},{"key":"2025121515113950000_15.3.e100276.27","doi-asserted-by":"crossref","DOI":"10.1186\/s13690-020-00402-5","article-title":"The influence of education on health: an empirical assessment of OECD countries for the period 1995-2015","volume":"78","author":"Raghupathi","year":"2020","journal-title":"Arch Public Health"},{"key":"2025121515113950000_15.3.e100276.28","doi-asserted-by":"publisher","DOI":"10.1093\/ije\/dyab149"},{"key":"2025121515113950000_15.3.e100276.29","doi-asserted-by":"crossref","first-page":"28","DOI":"10.3310\/nihropenres.13588.1","article-title":"Primary school attainment outcomes in children with neurodisability: Protocol for a population-based cohort study using linked education and hospital data from England","volume":"4","author":"Cant","year":"2024","journal-title":"NIHR Open Res"},{"key":"2025121515113950000_15.3.e100276.30","doi-asserted-by":"crossref","DOI":"10.3310\/nihropenres.13558.1","article-title":"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","volume":"4","author":"Gimeno","year":"2024","journal-title":"NIHR Open Res"},{"key":"2025121515113950000_15.3.e100276.31","doi-asserted-by":"publisher","DOI":"10.1093\/aje\/kwv254"},{"key":"2025121515113950000_15.3.e100276.32","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2022.21383"},{"key":"2025121515113950000_15.3.e100276.33","doi-asserted-by":"publisher","DOI":"10.1093\/ije\/dyx015"},{"key":"2025121515113950000_15.3.e100276.34","article-title":"Data Resource: the National Pupil Database (NPD)","volume":"4","author":"Jay","year":"2019","journal-title":"Int J Popul Data Sci"},{"key":"2025121515113950000_15.3.e100276.35","unstructured":"Department for Education . GOVUK; Get Information about Schools (GIAS), 2024. Available: https:\/\/get-information-schools.service.gov.uk\/"},{"key":"2025121515113950000_15.3.e100276.36","doi-asserted-by":"crossref","DOI":"10.1136\/archdischild-2021-323681","article-title":"Reductions in hospital care among clinically vulnerable children aged 0-4 years during the COVID-19 pandemic","volume":"107","author":"Etoori","year":"2022","journal-title":"Arch Dis Child"},{"key":"2025121515113950000_15.3.e100276.37","doi-asserted-by":"crossref","DOI":"10.1136\/archdischild-2021-323616","article-title":"Changes in adolescents\u2019 planned hospital care during the COVID-19 pandemic: analysis of linked administrative data","volume":"107","author":"Mc Grath-Lone","year":"2022","journal-title":"Arch Dis Child"},{"key":"2025121515113950000_15.3.e100276.38","article-title":"The impact of neurological disorders on hospital admissions for children and young people: a routine health data study","volume":"3","author":"Jarvis","year":"2018","journal-title":"Int J Popul Data Sci"},{"key":"2025121515113950000_15.3.e100276.39","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1001158","article-title":"Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study","volume":"9","author":"Berry","year":"2012","journal-title":"PLoS Med"},{"key":"2025121515113950000_15.3.e100276.40","doi-asserted-by":"crossref","unstructured":"Zylbersztejn A , Cant A , Gimeno L . Phenotyping neurodisability in hospital admissions records in England: a descriptive study of a national birth cohort. Prep 2024.","DOI":"10.1111\/ppe.70052"},{"key":"2025121515113950000_15.3.e100276.41","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2019-034077","article-title":"Rates and causes of mortality among children and young people with and without intellectual disabilities in Scotland: a record linkage cohort study of 796 190 school children","volume":"10","author":"Smith","year":"2020","journal-title":"BMJ Open"},{"key":"2025121515113950000_15.3.e100276.42","doi-asserted-by":"publisher","DOI":"10.1136\/jech.2010.111773"},{"key":"2025121515113950000_15.3.e100276.43","doi-asserted-by":"crossref","DOI":"10.1001\/jamapediatrics.2021.0054","article-title":"Association of Race\/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England","volume":"175","author":"Roman-Urrestarazu","year":"2021","journal-title":"JAMA Pediatr"},{"key":"2025121515113950000_15.3.e100276.44","unstructured":"ECHILD . Engaging with the public. echild educ. child health insights linked data. 2024. Available: https:\/\/www.echild.ac.uk\/engagements [Accessed 14 Nov 2024]."},{"key":"2025121515113950000_15.3.e100276.45","unstructured":"Department for Education . Pupil absence in schools in england, autumn and spring term 2023\/24. GOV UK; 2024. Available: https:\/\/explore-education-statistics.service.gov.uk\/find-statistics\/pupil-absence-in-schools-in-england"},{"key":"2025121515113950000_15.3.e100276.46","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2014-005331","article-title":"Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: a data linkage cohort study","volume":"4","author":"Hardelid","year":"2014","journal-title":"BMJ Open"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2025-100276","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T23:11:52Z","timestamp":1765840312000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2025-100276"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,3]]},"references-count":46,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2025,3,18]]},"published-print":{"date-parts":[[2025,3]]}},"alternative-id":["10.1136\/bmjopen-2025-100276"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2025-100276","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,3]]}}}