In advance of SUDEP Action Day 2023, Epilepsy Ireland issued a survey aiming to better understand awareness of sudden unexpected death in epilepsy (SUDEP) among people with epilepsy and about communications between them and their healthcare team about SUDEP. Today on SUDEP Action Day 2023, we are releasing our initial findings of the responses received.
In total, the survey received feedback from 326 respondents:
- 182 people living with epilepsy in Ireland.
- 144 parents/guardians of people with epilepsy living in Ireland.
Respondents with Epilepsy
Within this category, 32% indicated that they had no prior knowledge of SUDEP before taking our survey. Key findings from this group include:
- 93% would’ve liked to have been aware of SUDEP.
- 50% indicated that they would’ve liked their neurologist to discuss SUDEP with them; 27% indicated that they would’ve liked to have a discussion with their GP; while 12.5% indicated that they would’ve liked to have a discussion with their Epilepsy Nurse Specialist.
- 53% stated that they would like to have been told immediately on diagnosis, while 30% indicated that they would liked to have been told within a year of their diagnosis.
- 79% stated that it is important for medical professionals to discuss SUDEP, whether a patient is deemed at high or low risk.
68% respondents with epilepsy indicated that they had some awareness of SUDEP prior to taking the survey. Key findings from this group include:
- 66% of respondents stated they had never been directly told about SUDEP.
- 59% of respondents found out about SUDEP or learned about it online.
- 39% of respondents felt that being aware of SUDEP influenced their behaviour in terms of managing epilepsy.
- 64% indicated that they would’ve liked their neurologist to be the first one to discuss SUDEP with them; 25% indicated that they would’ve liked their Epilepsy Nurse Specialist to be the first to have the discussion with them.
- 47% stated that they would have liked to have been told about SUDEP immediately on diagnosis, while 32% indicated that they would liked to have been told within a year of their diagnosis.
- 79% believed that it was important for a medical professional to discuss SUDEP with a patient whether they were deemed high or low risk.
Within the category of People With Epilepsy as a whole, the following key findings apply:
- 48% would have liked to have been told about SUDEP immediately on diagnosis.
- 79% believe that it is important for a medical professional to have a discussion with a person with epilepsy about SUDEP, whether they are at high risk or not.
- 64% would’ve liked their neurologist to be the first person to speak to them about SUDEP.
Parents/Guardians of persons with epilepsy
Within this category, 27% indicated that they had no prior knowledge of SUDEP. Key findings within this group include:
- 94% would like to have been aware of SUDEP.
- 43% would like to have had their Epilepsy Nurse Specialist make them aware of SUDEP, with 33% indicating that they would like to have their neurologist discuss SUDEP with them.
- 43% indicated that they would have liked to have been made aware of SUDEP within a year of diagnosis; while 40% indicated that they would liked to have been made aware immediately on diagnosis.
- 79% believed that it is important for a medical professional to discuss SUDEP with patients, whether they’re deemed at high or low risk.
73% indicated that they had prior knowledge of SUDEP prior to taking this survey. Key findings within this group include:
- 52% were never told directly about SUDEP.
- 51% either read about it or found out about it online.
- 57% believed being aware of SUDEP influenced their behaviours towards the care of their loved one’s epilepsy.
- 63% indicated that they would have liked their neurologist to be the one to tell them about SUDEP.
- 54% indicated that they felt discussion on SUDEP should have happened immediately on diagnosis; while 35% indicated that they should have been told within a year of their loved one’s diagnosis.
- 86% believe that SUDEP should be discussed with patients by a medical professional, whether the patient is deemed at risk or not.
Within the Parents/Guardians category as a whole, the following key findings apply:
- 54% would’ve liked to been told about SUDEP immediately on diagnosis.
- 85% believed that it is important that a medical professional have a discussion with patients whether deemed at high or low risk.
- 63% would like to have had their neurologist be the first person to discuss SUDEP.
All Respondents combined
When all responses are combined, the following key findings apply:
- 82% of respondents believe that SUDEP should be discussed with people with epilepsy by medical professionals regardless of whether they are deemed at high risk or not.
- 50% believed that SUDEP should be discussed immediately on diagnosis; while 34% believed that is should be discussed within 1 year of diagnosis.
- 63% believed that the neurologist should be the first person to have discussion with a person with epilepsy/family member about SUDEP.
- 55% of respondents were never told directly about SUDEP but found out about it after reading or finding something online.
- 47% believed that being aware of SUDEP influenced their behaviour towards managing their/their loved one’s epilepsy.
Conclusions
In conclusion, there is a strong appetite within the epilepsy community to be informed about SUDEP at the earliest opportunity. Most people want to be told by their neurologist, regardless of whether they are deemed being high risk or not.
These findings fall broadly in line with a similar survey we conducted in 2020 – showing no significant changes in the level of awareness of SUDEP or changes in practice towards open doctor/patient discussions on SUDEP.
We would like to thank everyone who took the time to respond to this survey, which will help to further EI’s strategic aim to advance strategies to reduce the risk and incidence of epilepsy deaths.
On SUDEP Action Day, we would encourage everyone to please learn more about Sudden Unexpected Death in Epilepsy by visiting the ‘SUDEP’ section of our website.
Epilepsy Ireland future actions following completion of patient survey
While it is important to understand the patient experience and attitudes to SUDEP communication and education, it is also important to understand the clinical attitudes to discussion around SUDEP. To that end, we will be sharing the findings of our survey with epilepsy healthcare professionals via our colleagues in the Irish Epilepsy League (IEL) and the Irish Epilepsy Nurses Group (IENG).
In addition to sharing the findings of the patient experiences, we will be launching a new survey in the coming weeks for epilepsy healthcare professionals, aimed at understanding their experience and challenges which may exist. With a close working relationship between EI and both the IEL and IENG, we know there are significant challenges within epilepsy and neurological services as whole. Working together on solving these challenges may help address some of the findings listed above to help improve education on SUDEP.
Last year on SUDEP Action Day, we noted that a national strategy needs to be developed in taking targeted action to reduce epilepsy related and SUDEP deaths in Ireland. An Epilepsy Ireland supported study, investigating the true incidence of epilepsy deaths in Ireland is set to publish in the coming months and it is vital that when this study is finalised, that it is used as a catalyst to deliver such a strategy in Ireland.
The experiences captured in both the patient and clinical surveys will be vital in furthering our calls here.
In advance of this year’s SUDEP Action Day, we have also wrote to all members of the Oireachtas, providing them with key information about SUDEP as well as several Epilepsy Ireland initiatives which have been taken to help better understand SUDEP and possibly reduce epilepsy-related deaths. We have also highlighted how a national strategy is required and sought their support for same.
We look forward to working with all stakeholders going forward to further enhance this key strategy for people with epilepsy and their families in Ireland as it is only by working together that we can achieve a society where no person’s life is limited by epilepsy.
Additional notes on survey
- Responses to the survey were received from 17th August 2023 to 17th October 2023.
- It should be noted that this was not a scientific study. Respondents self-selected to take part in the survey, and as the majority had a pre-existing relationship with Epilepsy Ireland’s services/ information resources, there is likelihood of bias in the results. For example, the percentage of those previously aware of SUDEP may be higher in our respondent group than in the epilepsy population in general. As responses were not validated, issues around memory recall may also be a factor.
- Percentages quoted above have been rounded to the nearest percent.