Epilepsy patients with intellectual disabilities ‘require greater monitoring’

Posted May 13 2014 in conditions related to epilepsy

doctor sitting at desk

People with intellectual disability (ID) and epilepsy need to be treated and monitored more carefully to protect against the risk of sudden unexpected death in epilepsy (SUDEP).

A new study from the University of Leicester has evaluated health data from 898 local adults with ID over a 17-year period, finding that 244 of those who died during this period had an epilepsy diagnosis. Of these, 26 were cases of suspected or confirmed SUDEP.

It was found that in the majority of these instances, there was a lack of detailed documentation on the circumstances surrounding deaths and no communication with patients/carers about risks of SUDEP, as well as an absence of post-mortem reports or carers’ referral for bereavement counselling.

According to the study authors, this highlights the need for better seizure control, regular monitoring and raising awareness among patients and carers in order to reduce the number of mortalities in this patient group.

The researchers concluded: “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.”

Currently, it is estimated that SUDEP occurs in one in every 1,000 people with epilepsy, and it remains a topic that requires further research.

Posted by Steve Long