Mortality from sudden unexpected death in epilepsy (SUDEP) in a cohort of adults with intellectual disability.
Adults with ID plus epilepsy die from SUDEP far more than anyone else—check their seizure plan and caregiver warning today.
01Research in Context
What this study did
Ellingsen et al. (2014) followed adults with intellectual disability who also had epilepsy. They counted how many died from sudden unexpected death in epilepsy, called SUDEP.
Staff then checked the medical charts to see if families had been warned about this risk.
What they found
SUDEP killed these adults 37 to 52 times more often than adults in the general public.
Most files had no note that doctors ever told caregivers about this danger.
How this fits with other research
Moxley (1998) showed that adding vigabatrin can cut seizures in the same ID group. Fewer seizures should lower SUDEP risk, yet R et al. still saw sky-high death rates years later.
Shepherd et al. (2021) found that older autistic adults with ID carry heavy neurological burdens. Their data fit with R et al.: both papers reveal hidden medical danger in the same population.
Dudley et al. (2019) tracked hospital stays from drug side effects. Together with R et al., the pair warns that adults with ID face both treatment harm and untreated seizure harm.
Why it matters
If you serve adults with ID and epilepsy, open each plan today. Add a seizure log, night-time monitoring, and a signed SUDEP talk with the team. These steps close the gap vigabatrin alone cannot close.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID. METHODS: All adults (≥20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post-mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs). RESULTS: A total of 898 adults with ID had died over the 18-year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty-six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All-cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0-2.4] and 2.8 (95% CI: 2.5-3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7-3.8) and 5.6 (95% CI: 4.6-6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9-60.2) and 52.0 for women (95% CI: 23.8-98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post-mortem reports or carers' referral for bereavement counselling. CONCLUSION: The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12047