A combination of missed prevention opportunities and health inequalities can result in the early deaths of people living with epilepsy and intellectual disabilities, a study has shown.
Around 1.2million people in England have some form of intellectual disability, with epilepsy estimated to impact 20-25% of them - up to 300,000 people - compared to just 1% of the general population.
However, until now there has been no national-level population-based evidence on the risks and protective factors specifically contributing to epilepsy-related deaths in people with intellectual disability.
This new research aims to fill that gap, with its analysis of nearly 10,000 deaths between 2016 and 2021 constituting the largest global study examining epilepsy-related mortality in adults with intellectual disabilities and epilepsy.
It found epilepsy was the primary cause of death in just over 16% of those people, and that they died at a significantly younger average age - 56 compared to 62 - than those who had issues other than epilepsy listed as the primary cause of death in their health records.
The study particularly highlights significant disparities in epilepsy-related mortality based on ethnicity, with African and Asian individuals dying younger - at an average age of just 36 - than their White British counterparts.
All of this, the authors say, is despite the fact targeted interventions - including annual health checks, multidisciplinary care access, and specialist psychiatric and speech and language therapy support - do exist but are rarely administered in a uniform manner. The paper showcases these interventions as being effective at increasing a person's length of life.
Writing in the Journal of Neurology, Neurosurgery, and Psychiatry, the study's authors say poor quality of care, service gaps and the lack of annual health checks should be considered unacceptable in modern healthcare.
As such, they have called for a systemic service redesign to try and prevent avoidable epilepsy-related deaths among people with intellectual disabilities in the future.
The study was led by experts in epilepsy, intellectual disability and medical statistics from the University of Plymouth, the University of Exeter and Cornwall Partnership NHS Foundation Trust, working with colleagues in universities across the UK.
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