Epilepsy management among people with ID should be multidisciplinary

By Reza Kiani, MD, MRCPsych
Adult Learning Disability Service, Leicestershire Partnership NHS Trust

People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths, especially those due to Sudden Unexpected Death in Epilepsy (SUDEP) may be potentially preventable through better seizure control and raising awareness among patients and caregivers.

What did you do in your research?
We identified all adults living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010. People with ID who died during the same period, including those who died from SUDEP were identified using death certificate data.

What did you find out?
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. In spite of this high mortality rate, we found little detailed documentation on the circumstances surrounding deaths.

What are the take-home messages?
Epilepsy management in this vulnerable population should be multiagency/multidisciplinary to reduce morbidity and mortality. Risk of SUDEP and other epilepsy related deaths should be discussed with patients and their families/caregivers in a sensitive way with the goal of improving seizure control and monitoring.

To learn more about these findings contact Reza Kiani.

Full Journal Article
Kiani, R., Tyrer, F., Jesu, A., Bhaumik, S., Gangavati, S., Walker, G., Kazmi, S. & Barrett, M. (2014). Mortality from sudden unexpected death in epilepsy (SUDEP) in a cohort of adults with intellectual disability. Journal of Intellectual Disability Research, 58(6), 508–520.