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

BACKGROUND: Mortality 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. OBJECTIVES: To estimate all-cause and cause-specific mortality risk between the ages of 11-22 years in young people with and without neurodisability in England. METHODS: In 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. RESULTS: Among 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. CONCLUSIONS: Young 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.