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Mortality Risk Between Ages 11 and 22 Years Among Young People With Neurodisability in England: A National Cohort
Louise Macaulay1, Jennifer Saxton2, Tamsin Ford2
1Great Ormond Street Institute of Child Health, University College London, London, UK.
Paediatric and Perinatal Epidemiology
|July 9, 2026
Summary
Young people with neurodisability face significantly higher mortality risks between ages 11-22. This increased risk, primarily from medical causes, highlights a critical vulnerability during the transition to adult healthcare services.
Area of Science:
- Public Health
- Pediatric Neurology
- Epidemiology
Background:
- Mortality risk escalates from childhood through early adulthood.
- Young individuals with neurodisability (neurological conditions causing functional limitations) are particularly vulnerable during the transition from pediatric to adult services.
Purpose of the Study:
- To estimate all-cause and cause-specific mortality risk in young people aged 11-22 in England.
- To compare mortality risk between individuals with and without neurodisability during this age range.
Main Methods:
- A national cohort study utilizing linked health and education records (ECHILD) from ages 11 to 22.
- Neurodisability identified from pre-age 11 hospital records and supplemented with education data for intellectual disability and autism.
- Kaplan-Meier curves and Cox models used for gender-specific mortality risk estimation; competing-risks methods for cause-specific risk.
Main Results:
- Among over 3.6 million young people, 4.0% had neurodisability, accounting for 24% of the 5565 deaths between ages 11-22.
- By age 22, cumulative mortality risk was substantially higher for females (1.6%) and males (1.3%) with neurodisability compared to peers (0.14% and 0.28%, respectively).
- Medical causes predominated deaths among those with neurodisability, with significantly elevated risks observed in both genders.
Conclusions:
- Young people with neurodisability exhibit a markedly increased mortality risk between ages 11-22 compared to their peers.
- The elevated risk is predominantly driven by medical causes, with notable variations across genders and specific neurodisability subgroups.
- Findings underscore the heightened vulnerability of young people with neurodisability during critical healthcare transitions.
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