Evidence map›Paper›PMID 42423521›Full record

ArticlePaediatric and perinatal epidemiology2026

Mortality Risk Between Ages 11 and 22 Years Among Young People With Neurodisability in England: A National Cohort Study Using Linked Health and Education Data.

Louise Macaulay, Jennifer Saxton, Tamsin Ford, Stuart Logan, Katie Harron, Ruth Gilbert, Ania Zylbersztejn

Abstract read
In one paragraph

Article in Paediatric and perinatal epidemiology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Louise MacaulayGreat Ormond Street Institute of Child Health, University College London, London, UK.ORCID https://orcid.org/0009-0005-2017-9380
Jennifer SaxtonDepartment of Psychiatry, University of Cambridge, Cambridge, UK.ORCID https://orcid.org/0000-0003-4353-0653
Tamsin FordDepartment of Psychiatry, University of Cambridge, Cambridge, UK.ORCID https://orcid.org/0000-0001-5295-4904
Stuart LoganNIHR Applied Research Collaboration for the Southwest, University of Exeter Medical School, Exeter, UK.ORCID https://orcid.org/0000-0002-9279-261X
Katie HarronGreat Ormond Street Institute of Child Health, University College London, London, UK.ORCID https://orcid.org/0000-0002-3418-2856
Ruth GilbertGreat Ormond Street Institute of Child Health, University College London, London, UK.ORCID https://orcid.org/0000-0001-9347-2709
Ania ZylbersztejnGreat Ormond Street Institute of Child Health, University College London, London, UK.ORCID https://orcid.org/0000-0003-1035-1448

Funding

National Institute for Health and Care Research NIHR206946
6 · The paper itself

Abstract

backgroundMortality risk rises from childhood into early adulthood. Young people with neurodisability (neurological conditions causing functional limitations) may be particularly vulnerable during the transition from paediatric to adult services.

objectivesTo estimate all-cause and cause-specific mortality risk between the ages of 11-22 years in young people with and without neurodisability in England.

methodsIn this national cohort study, we used linked health and education records from ECHILD to follow pupils from age 11 between 2008-09 and 2014-15 to age 22. Neurodisability was identified from hospital admission records before age 11, likely capturing more severe conditions, and supplemented with education data for intellectual disability and autism. Gender-specific crude cumulative mortality risk and relative differences were estimated using Kaplan-Meier curves and Cox models, with cause-specific risk estimated using competing-risks methods.

resultsAmong 3,601,180 young people, 143,864 (4.0%) had neurodisability. Between the ages of 11-22, 5565 (0.15%) died; 24% had neurodisability. By age 22, cumulative mortality risk was 1.6% (95% confidence interval [CI] 1.4, 1.8) among females with neurodisability versus 0.14% (95% CI 0.13, 0.15) among peers without neurodisability (hazard ratio [HR] 13.88, 95% CI 12.55, 15.35), an absolute risk difference of 1.5% (95% CI 1.3, 1.6). Among males with neurodisability, cumulative risk was 1.3% (95% CI 1.2, 1.4) versus 0.28% (95% CI 0.27, 0.29; HR 5.34, 95% CI 4.94, 5.78) among peers, an absolute risk difference of 1.0% (95% CI 0.9, 1.1). Most deaths among those with neurodisability were from medical causes, with cumulative risks of 1.5% (95% CI 1.3, 1.6; HR 25.87, 95% CI 23.03, 29.07) in females and 1.1% (95% CI 0.96, 1.2; HR 14.70, 95% CI 13.29, 16.26) in males by age 22.

conclusionsYoung people with neurodisability had a higher mortality risk than peers between ages 11-22, largely from medical causes, with variation by gender and neurodisability subgroup.

Indexed as

Intellectual DisabilityNervous System DiseasesAdolescentCause of DeathChildCohort StudiesEnglandFemaleHumansMaleRisk FactorsYoung Adultadolescentcohort studiesmortalityneurodevelopmental disorderstransition to adult careyoung adult

Identifiers

PMID42423521
PMCPMC13522658

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.