Experts say as many as 76 percent of fatalities could be caused by a substantial number of people between the ages of 16 and 54 not receiving neurology care after an epilepsy-related hospital admission.
The findings form part of the first national study of epilepsy-related deaths in Scotland, which researchers hope will lead to a review of how neurological services are provided for people with epilepsy.
Epilepsy is a common condition that affects the brain and causes frequent seizures. It is associated with a significant risk of premature death, which can be caused by the epilepsy itself or its complications. Of the 600,000 people with epilepsy in the UK, 60,000 live in Scotland.
Experts from the Muir Maxwell Epilepsy Centre at the University of Edinburgh used the community health index number (CHI)—a unique marker assigned to everyone living in Scotland registered with the NHS—to identify all epilepsy-related deaths over a seven-year period.
The databases contain information about hospital admissions, A&E attendances, drug prescriptions, and death certificates. Researchers were also able to carry out a detailed review of medical records.
The team identified 1921 deaths linked with epilepsy, with people with the condition in the 16–54 age group being twice as likely to die prematurely than the population at large. A significant number of these came from the most socially deprived areas of Scotland.
The team found 76 percent of deaths in this age group were potentially preventable. Poorly controlled epilepsy, cardiovascular disease, and narcotic and alcohol addiction were cited as causes of avoidable deaths.
Researchers noted that 62 percent of those who died had been admitted to hospital for seizures in the years before their deaths, yet only 27 percent were referred for expert assessment at an epilepsy clinic.
Data collected from 100 GP practices on patients who had not attended hospital for treatment of their epilepsy showed half had mental health issues.
As well as leading to improved access to epilepsy services, researchers hope their findings will pave the way for the creation of an epilepsy mortality register to better understand the causes of premature death in people with epilepsy.
“Twenty years ago a UK-wide audit of epilepsy deaths raised concerns about the standard of care adults with epilepsy received. Our study shows premature mortality in adults with epilepsy has not decreased since that study, suggesting that either the standard of care has not improved, or preventable deaths are still occurring despite improvements. Thus an up-to-date audit of epilepsy care is urgently needed, along with parallel studies to make clear the mechanisms underlying epilepsy-related deaths,” says Dr. Susan Duncan, honorary clinical senior lecturer, University of Edinburgh’s Muir Maxwell Epilepsy Centre