Epilepsy-related premature mortality in adults with intellectual disability in England: a population based analysis

Background Epilepsy affects 22.2% of people with intellectual disability compared with 1% of the general population. This study aims to identify characteristics associated with epilepsy-caused deaths in adults with intellectual disability and epilepsy in England. Methods We conducted a retrospective population-based analysis of all deaths of adults with intellectual disability and epilepsy reviewed by the English Learning from Lives and Deaths programme (2016–2021). Deaths were classified by whether epilepsy was the primary cause or not. Demographic, clinical and care-related variables were analysed using multivariable Cox regression for associations with age at death and factors linked to epilepsy-related mortality. Results Epilepsy was the primary cause of death in 1584 (16.2%) of 9756 deaths of people with intellectual disability and epilepsy. These individuals died at a significantly younger median age than those who died of other causes (56 vs 62 years; p<0.001). Epilepsy and non-epilepsy-related deaths in this population were more common among people with moderate-to-profound intellectual disability (p<0.001) and those of African or Asian ethnicity (p<0.001). Risk factors included poor quality of care, service gaps and lack of annual health checks (p<0.001). Psychiatry and speech and language therapy (SALT) input was protective. Conclusion Epilepsy-related deaths in intellectual disability may cause earlier mortality because of pervasive health inequalities and missed prevention opportunities. Targeted interventions, including annual health checks, improved multidisciplinary care access, improved inclusion of ethnic minorities, and integration of specialist psychiatric and SALT support may increase length of life. Systemic service redesign is required to reduce avoidable epilepsy-related mortality.