Sudden Unexpected Death in Epilepsy (SUDEP) - empowering patients

“No one ever told us”: new video resource guides clinician conversations on Sudden Unexpected Death in Epilepsy, to empower patients.Epilepsy specialists and researchers at Monash University’s School of Translational Medicine (STM) and Alfred Health, together with the Epilepsy Foundation, have developed a new video to improve clinicians’ awareness of Sudden Unexpected Death in Epilepsy (SUDEP), covering important aspects of patient care and safety.SUDEP often occurs during sleep, with no clear cause.Made possible by a donation to the Epilepsy Foundation from the Massey Charitable Foundation, SUDEP: A Conversation Worth Having features:

• leading neurologists and epilepsy researchers who explain what SUDEP is, its prevalence in Australia, who it affects, risk factors and prevention
• guidance for leading person-centered conversations with patients, based on individual risk factors
• information for clinicians to share with patients to help them understand their condition better and take steps to mitigate their risk.

STM Head of School Professor Terence O’Brien, Deputy Director Research and Head of the Neuroscience Clinical Trials Unit at Alfred Health, emphasized the importance of having these conversations. “Discussing SUDEP with patients can be challenging, but it’s crucial for their safety and well-being. This video will give clinicians confidence to have these important discussions and ensure their patients are as informed and prepared as possible.”Dr Shobi Sivathamboo, Senior Research Fellow and Head of SUDEP Research at the Department of Neuroscience at Alfred Health and STM, said patients and their families were often completely unaware of SUDEP.“The possibility of dying from epilepsy is daunting — patients have a right to know, but clinicians are often reluctant to talk about it. While SUDEP risk can’t be eliminated altogether, empowering patients to make informed decisions and manage their risk starts with conversations like this.”“It shouldn’t be a one-time discussion… when asked, about 90 per cent of patients and their caregivers want to know about their risk of SUDEP; but in reality only about 30 per cent of them [are] given adequate information”.Epilepsy Foundation CEO Graeme Shears said the video would help people living with epilepsy and those close to them. “We often hear from our clients who have lost a loved one to SUDEP that they would have taken different steps to reduce risk and prepare themselves better, had they known that death from epilepsy was a possibility.”Rheana Nation lost her son, Sam, 23, to SUDEP in January this year. “From a mother’s perspective, I think doctors and specialists have a responsibility to talk about SUDEP, in those cases where they think it’s a possibility,” Ms Nation said.“You can’t act on something if you don’t know about. There’s the devastation of the person passing away due to SUDEP – you can’t take away that grief, but if you knew all the things you’d done to lower the risk, if you have the information, and the person with epilepsy had the information, then it reduces a lot of the ‘what-ifs’ you tend to go through.”The video is available on YouTube. The Epilepsy Foundation encourages all clinicians who work with epilepsy patients to view the video and integrate its insights into their practice. Source: monash.edu