New research published in the British Journal of General Practice has shown that epilepsy mortality is rising and that information routinely collected by GPs could be used to help save lives.
Deaths in epilepsy rose by 31% in males and 39% in females between 1995 and 2005 at a time when mortality from all causes in the general population declined.
Deaths that are amenable to medical intervention through risk factors have been targeted in the UK’s health policies, but this has not been done for epilepsy.
The study shows how information routinely collected on people with epilepsy by GPs can be used to identify people at risk and take action.
Key risk factors associated with mortality re continuing seizures, poor adherence to medication, alcohol misuse, depression and previous injury.
Epilepsy Bereaved Director Jane Hanna who received an OBE last year for her services to families bereaved by epilepsy said;
“Until recently there was no monitoring of people with epilepsy in the community and research on people who died showed that record keeping was often poor. Since 2004 GPs monitor patients with epilepsy once a year and receive funding for doing this (QoF). This study has opened up a new opportunity to make use of the GP contract to help save lives.
This is a wake up call to General Practice to step up care to ensure systems are in place to protect patients. It also highlights the urgent need for investigation of epilepsy deaths”
The research was funded by Epilepsy Bereaved (EB) which is unique in dedicating research funds exclusively to the prevention of sudden unexpected death in epilepsy (SUDEP) and other epilepsy-related deaths.
The charity established the SUDEP Research Initiative; a collaboration between Epilepsy Bereaved and a team of researchers at King’s College, University of London and King’s College Hospital NHS Foundation Trust.
Dr Martin Gulliford, Professor Mark Richardson, Professor Leone Ridsdale; Department of Primary Care and Public Health Sciences, King’s College London and Neuroscience Department, Institute of Psychiatry, King’s College London who led the study have called for their findings to be assessed with further research.
The researchers utilised the General Practice Research Database (GPRD) to evaluate trends in epilepsy mortality and risk factors for mortality in epilepsy. The study has shown how risk of death can be linked to data routinely collected in General Practice. This needs to be linked to more performance indicators (called the Quality and Outcome Framework), which rewards GPs for improving outcomes.
Dr Henry Smithson, a GP in Sheffield who has a research interest in epilepsy, said GPs could use computer software to flag up patients who have not re-ordered medication.
He added: ‘It is difficult to measure or find people who are non-adherent to medication. GPs do become aware of problems if patients order medication early, but I haven’t seen a GP practice system that gives a warning if patients are late in ordering their repeat prescriptions.’
