Mortality risk by age 22 in young people with neurodisability in England: a national cohort study using linked health and education data

BackgroundAdolescence and early adulthood are periods of increased mortality risk, and young people with neurodisability may be particularly vulnerable, yet evidence on mortality during the transition from paediatric to adult services is limited. ObjectivesTo estimate all-cause and cause-specific mortality risk from ages 11 to 22 years in young people with and without neurodisability in England. MethodsWe used the Education and Child Health Insights from Linked Data (ECHILD) database to follow pupils aged 11 in 2008-15 from the start of secondary school to age 22. Neurodisability was identified from education and hospital records. Gender-specific cumulative mortality risk and relative differences, overall and by neurodisability subtype, were estimated using Kaplan-Meier curves and Cox proportional hazards models. We repeated analyses for deaths due to medical or injury-related causes. ResultsAmong 3,601,180 young people, 143,864 (4.0%) had neurodisability. By age 22, 5,565 (0.15%) had died; 24% of whom had neurodisability. Among females, cumulative mortality risk was 1.6% (95% Confidence Interval [CI] 1.4-1.8%) in those with neurodisability versus 0.14% (95% CI 0.13-0.15%) in peers (Hazard Ratio [HR] 13.9, 95% CI 12.6-15.4). Among males, cumulative risk was 1.3% (95% CI 1.2-1.4%) in those with neurodisability versus 0.28% (95% CI 0.27-0.29%) in peers (HR 5.3, 95% CI 4.9-5.8). Among young people with neurodisability, most deaths were due to medical causes, with cumulative risks of 1.5% (95% CI 1.3-1.6%; HR 25.9, 95% CI 23.0-29.1) in females and 1.1% (95% CI 0.96-1.2%; HR 14.7, 95% CI 13.3-16.3) in males. Mortality risk was highest in those with cerebral palsy, developmental delay, epilepsy, congenital anomalies, and learning disability, and lowest among autistic young people. ConclusionsYoung people with neurodisability, particularly females, face substantially elevated mortality risk, largely from medical causes. Variation by neurodisability subtype and gender highlights the need for tailored care during transition to adulthood. SynopsisStudy question: What are the all-cause and cause-specific mortality risks among young people aged 11 to 22 years with neurodisability compared with their peers in England? Whats already known: Young people with neurodisability face increased mortality risk, but evidence on risk during the transition from paediatric to adult services is limited. What this study adds: In a national cohort of 3.6 million pupils followed from age 11 to 22, 4% had neurodisability. These young people had substantially higher mortality than peers, particularly females, with most deaths due to medical causes. Mortality risk varied by neurodisability subtype. These findings quantify the magnitude of excess mortality in young people with neurodisability and highlight the need for targeted support during the transition to adulthood.