New ECHILD Publication: Mortality Risk Among Young People With Neurodisability in England
A new study finds a higher mortality risk among young people with neurodisability relative to peers between ages 11-22, largely from medical causes. This study, led by a group of researchers including Louise Macaulay, Katie Harron, Ruth Gilbert and Ania Zylbersztejn, has recently been published in the journal Paediatric and Perinatal Epidemiology.
Neurodisability refers to neurological conditions causing functional limitations, including intellectual disability, autism, epilepsy, cerebral palsy and genetic conditions (e.g. Down syndrome) that often require specialist paediatric care. Young adulthood is a vulnerable period for someone with these conditions, as the transition from paediatric to adult services is often associated with disruptions in care and increased risk of unmet needs. Using linked health and education records from ECHILD, this national cohort study tracks 3.6 million young people aged 11 to 22 over the period 2008-2015 to map out cumulative mortality risks of individuals with and without neurodisability.
Gender-specific mortality risk and relative differences were estimated using survival analysis models, with cause-specific risk estimated using competing risks methods. For both young men and women, neurodisability is associated with a higher mortality risk by age 22. The difference for women is particularly striking, where cumulative mortality risk is 1.6% for women with neurodisability, compared to only 0.14% among peers without. The share of deaths from medical causes is also much higher for individuals with neurodisability compared to their healthy peers, corresponding to a 15-26-fold risk of dying from medical causes. However, mortality risk does vary substantially between neurodisability subgroups, with the highest cumulative risk being associated with cerebral palsy (6.3-6.5%) and lowest with autism (0.38-0.52%).
Consistent with prior literature, the findings of this study highlight the importance of care continuity and coordinated support transitioning into adult services for individuals with complex health needs.
About the study
This research used anonymised, linked administrative data from ECHILD, which combines Hospital Episode Statistics, National Pupil Database records and ONS mortality data for nearly all children in England.
ECHILD data are available to accredited researchers through secure access.
📄 Read the full open‑access article:
[DOI: 10.1111/ppe.70178]