Seizure and Sudden Unexpected Death in Epilepsy (SUDEP) characteristics in an urban UK intellectual disability service

Purpose: This study identifies epilepsy-related characteristics and SUDEP risk factors in people with epilepsy (PWE) attending an urban community ID service in the UK where managing epilepsy is not part of the service remit, to understand the care provided to this vulnerable population.

Methods: An electronic database search in a north London community ID service (catchment population approx. 290,000) identified relevant ID/epilepsy characteristics in PWE to compare those with mild ID to moderate-profound ID. The SUDEP and Seizure Safety Checklist ("Checklist"), was administered to patients and families/carers. Risk management data was compared to similar data from Cornwall UK where PWE are supported within the ID service and the Checklist is used annually.

Results: One fifth (137/697) of people attending the service had epilepsy. Over 3/4 had moderate-profound ID. Neurodevelopmental disorders were coexistent in 2/3, psychiatric conditions in 1/3 (1/4 of which was psychosis). The mean number of anti-seizure drugs was 1.45 ± 0.98, and 1/4 were taking psychotropic medications. Over a third did not have an epilepsy care plan. None contacted (n = 103) had SUDEP awareness. The median number of Checklist risk factors was seven (IQR 4.5-9). A third had experienced seizures lasting >5 min or status epilepticus. In comparison to the Cornish ID data significant differences were evident in four of seven modifiable risk factors.

Conclusions: This real world study highlights the complexity and risks among PWE and ID. The lack of a "joined up" approach can undermine the safety of this vulnerable population. Person-centred risk communication and care plans are easily achievable and essential.

Keywords: Communication; Intellectual disability; Neurodevelopment; SUDEP; Seizure characteristics; Seizure safety & SUDEP checklist; Service delivery.