A recent study from Germany has highlighted the need for greater communication regarding Sudden Unexpected Death in Epilepsy (SUDEP), and the positive impact that this communication can have on people with epilepsy.
SUDEP is a rare but devastating aspect of epilepsy, with an estimated 21-44 people passing away in Ireland every year due to SUDEP.
The study was undertaken by researchers from a number of clinical & research sites across Germany and sought to establish awareness of SUDEP amongst people with epilepsy, and the impact of the information they received.
236 people with epilepsy were recruited to the study and their awareness of SUDEP was measured at the outset.
Participants were then provided with further information about SUDEP, and after a 3-month interval, researchers assessed the impact of receiving the information. In particular, the researchers assessed whether knowing about SUDEP affected participants’ quality of life and whether participants adjusted their behaviours regarding approaches to their own epilepsy.
At the outset of the research, just 27.5% of participants were aware of SUDEP. Less than 10% said they had been informed by a neurologist.
Having received information on SUDEP, 205 participants (87%) returned as part of the 3-month follow-up to share how knowing this information affected them.
The key findings from this group were as follows:
- More than 85% of participants were satisfied or very satisfied with the provision of SUDEP information.
- No immediate or long-term adverse effects were noted for overall health, quality of life, depressive symptoms, stigma, or seizure worry.
- At 3 months after receipt of SUDEP information, over 80% of participants recommended SUDEP information for all epilepsy patients.
In addition, 25% of patients in this group reported strong behavioural adjustments at the 3-month follow-up. This included making lifestyle choices to manage stress; increased medication adherence; and sleep management, amongst other factors.
You can read this research in full by visiting the 'Online Wiley Library' website.
The findings of this research align with findings of an Epilepsy Ireland survey which we released in 2020. A key finding of the survey noted 81% of people with epilepsy surveyed wanted to be provided with information on SUDEP whether they were deemed high risk or not.
It is clear from this study that the majority of people with epilepsy want to be informed about SUDEP, and there are clear benefits to doing so. While there is unfortunately still a lot we do not know about SUDEP, Epilepsy Ireland believe that in the absence of a breakthrough on understanding why SUDEP happens and ways to prevent it, we must focus on what we do know. There are known factors which can increase a person’s risk of SUDEP, and it is very important that people with epilepsy and their families are aware of these risks. You can learn more about SUDEP by visiting the ‘SUDEP’ section of our website.
Separately, this study also highlights how patients want to hear about SUDEP from their healthcare professionals with the study’s authors noting, “Our findings contrast with neurologists' concerns, indicating that the provision of SUDEP information did not increase the symptoms of depression or reduce HRQoL among adult PWE. Our data reinforce that patient education should be considered a central component of quality care. Our findings are in line with earlier findings showing that patients request that SUDEP counselling be included as a component of general epilepsy education and emphasize that adverse effects should not be feared. Even the small group of participants who reported dissatisfaction or concerns just after learning about SUDEP or at 3-month follow-up expressed very high levels of approval (>89% for all subgroups) for the inclusion of SUDEP counselling in standard epilepsy education.”
Again, this finding aligns with our own Epilepsy Ireland survey back in 2020 – where 50% of respondents who were not previously aware of SUDEP prior to our survey said they would have liked to have been informed about SUDEP by their neurologist.
We believe that reducing epilepsy-related deaths is a public health priority and this is a key strategic aim for our organisation. An Epilepsy Ireland funded study is currently determining the incidence of SUDEP and other epilepsy-related deaths in Ireland. When the study publishes (expected to be later this year) this will for the first time give us accurate data on the scale of the problem in Ireland. We hope the findings of the study will become a catalyst for long overdue collaborative action by the State, the medical community and everyone involved in epilepsy care, as well as those living with the condition, to develop strategies to reduce epilepsy-related deaths & SUDEP in Ireland.
Further Information
- Further information on SUDEP can be found by visiting the 'SUDEP' section of our website.
- If you have lost a loved one due to SUDEP or an epilepsy-related death, you can provide further information on this by providing their details to the Epilepsy Deaths Register for Ireland. You can find further information on this by visiting the Epilepsy Deaths Register for Ireland website.
- If you need any further information or support regarding your or a loved one’s epilepsy, please do not hesitate to contact your local Community Resources Officer. You can find their details by visiting the ‘Our Local Service’ section of our website.