Death in people with epilepsy has not fallen despite better drugs being developed. If doctors could identify the people who have a higher risk of dying, they may give them additional help. Doctor surgeries in England have kept information about people with epilepsy in a large computer database. This information is available to researchers, with patient names removed so that no one can be identified. Our study will use this information to find out what can increase the risks of death in people with epilepsy. Using this database with 14 million patient records, we will look at the information on people with epilepsy. About 1% of people in the UK have epilepsy, so we can expect to have records on about 140,000 people with epilepsy. Some risk factors could be for example having other illnesses, having seizures often, not taking medication as prescribed, alcohol and illegal drug use.
Using statistics, we can look at which factors increase the risk of death in people with epilepsy, by comparing the records of people with epilepsy who died to those that did not. By having a list of factors, doctors could identify which of their patients are at higher risk of death.
Epilepsy is the fifth highest treatable cause of death before 75 for males, and eighth highest for females; this situation is worsening, rather than improving. It may be possible to avert deaths by identifying those at risk and offering extra guidance. Our aim is to find what are the avoidable risk factors for death in epilepsy that can be identified using routinely available GP electronic data?
We will conduct a cohort study using data form the Clinical Practice Research Datalink (CPRD), supplemented by Office of National Statistics data. Available will be 14 million patient records, containing 140,000 records of people with epilepsy (PWE), with estimated 1,200 epilepsy-related deaths.
Exposure data includes: alcohol overuse, depression, substance misuse, injury (e.g. accidents), self-injury, overdose and suicide attempts, a record of seizure free status, adherence to antiepileptic drugs, smoking, and predictors of vascular disease (including hypertension). We will report the risks of premature death in epilepsy for each variable.
We believe this will provide potent evidence with which SUDEP Action and others can advocate for routine identification of risk, the provision of step-up approaches to management of epilepsy, and mortality-prevention in UK primary care.
Leone Ridsdale - Chief Investigator - King's College London (KCL)
Gabriella Wojewodka - Corresponding Applicant - King's College London (KCL)
Gabriella Wojewodka - Collaborator - King's College London (KCL)
Mark Ashworth - Collaborator - King's College London (KCL)
Mark Richardson - Collaborator - King's College London (KCL)
Martin Gulliford - Collaborator - King's College London (KCL)
ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation