Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related death in people living with epilepsy (PWE), with an incidence of 1.2 per 1000 patient years.
Reference Whitney, Keller and Li1–Reference Keller, Whitney and Li2
The strongest risk factor for SUDEP is the presence/frequency of bilateral tonic-clonic seizures, while other risk factors include nocturnal seizures, living alone and noncompliance with anti-seizure medications.
Reference Whitney, Keller and Li1
PWE and their caregivers want to be informed about epilepsy and should be counseled on SUDEP incidence, risk factors and SUDEP prevention.
Reference Whitney, Jones and Sharma3
Seizure monitoring devices may provide the opportunity for early medical intervention both during and after a seizure and could have the potential to mitigate seizure-related injuries and/or death.
Reference Donner, Devinsky and Friedman4
However, no device has been proven to prevent the occurrence of SUDEP.
Reference Whitney, Jones and Sharma3
Maltseva et al. explore the experience of seizure monitoring devices in a cohort of caregivers of children with epilepsy from Alberta.
Reference Maltseva, Winterburn and Wasserman5
More than one-third of caregivers had experience with seizure monitoring devices, although most were medically unapproved, such as camera devices and vital sign monitors.
Reference Maltseva, Winterburn and Wasserman5
Caregivers with SUDEP knowledge were more likely to use seizure monitoring devices.
Reference Maltseva, Winterburn and Wasserman5
However, only 11% of caregivers had been recommended to use a device by their treating physician.
Reference Maltseva, Winterburn and Wasserman5
The main barriers to device use among caregivers were a lack of knowledge and seizure-type applicability.
Reference Maltseva, Winterburn and Wasserman5
These findings highlight the need for informed decision-making when discussing seizure monitoring devices with PWE.
Interestingly, the authors did not find a difference in device monitoring between PWE who had seizures with motor symptoms or without.
Reference Maltseva, Winterburn and Wasserman5
However, seizure monitoring devices are generally indicated/recommended for those with bilateral-tonic seizures.
Reference Beniczky, Wiebe and Jeppesen6
Both the International League Against Epilepsy and the International Federation of Clinical Neurophysiology recommend using validated devices for the detection of generalized tonic-clonic seizures and focal to bilateral tonic-clonic seizures, but not other seizure types (weak/conditional recommendation).
Reference Beniczky, Wiebe and Jeppesen6
In addition, more than half of caregivers in the cohort discontinued devices over time due to a number of factors such as poor seizure detection, high false alarms, disruptive sleep, etc.
Reference Maltseva, Winterburn and Wasserman5
Thus, this further emphasizes limitations with current seizure monitoring devices and the need for tailored physician guidance/education when counseling around device use in PWE.
Overall, Maltseva et al. provide important insights into the current landscape of seizure monitoring devices; however, there is a pressing need for increased awareness, advocacy/funding and medically approved device access nationally for PWE and their caregivers.
Reference Maltseva, Winterburn and Wasserman5
Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related death in people living with epilepsy (PWE), with an incidence of 1.2 per 1000 patient years. Reference Whitney, Keller and Li1–Reference Keller, Whitney and Li2 The strongest risk factor for SUDEP is the presence/frequency of bilateral tonic-clonic seizures, while other risk factors include nocturnal seizures, living alone and noncompliance with anti-seizure medications. Reference Whitney, Keller and Li1 PWE and their caregivers want to be informed about epilepsy and should be counseled on SUDEP incidence, risk factors and SUDEP prevention. Reference Whitney, Jones and Sharma3 Seizure monitoring devices may provide the opportunity for early medical intervention both during and after a seizure and could have the potential to mitigate seizure-related injuries and/or death. Reference Donner, Devinsky and Friedman4 However, no device has been proven to prevent the occurrence of SUDEP. Reference Whitney, Jones and Sharma3
Maltseva et al. explore the experience of seizure monitoring devices in a cohort of caregivers of children with epilepsy from Alberta. Reference Maltseva, Winterburn and Wasserman5 More than one-third of caregivers had experience with seizure monitoring devices, although most were medically unapproved, such as camera devices and vital sign monitors. Reference Maltseva, Winterburn and Wasserman5 Caregivers with SUDEP knowledge were more likely to use seizure monitoring devices. Reference Maltseva, Winterburn and Wasserman5 However, only 11% of caregivers had been recommended to use a device by their treating physician. Reference Maltseva, Winterburn and Wasserman5 The main barriers to device use among caregivers were a lack of knowledge and seizure-type applicability. Reference Maltseva, Winterburn and Wasserman5 These findings highlight the need for informed decision-making when discussing seizure monitoring devices with PWE.
Interestingly, the authors did not find a difference in device monitoring between PWE who had seizures with motor symptoms or without. Reference Maltseva, Winterburn and Wasserman5 However, seizure monitoring devices are generally indicated/recommended for those with bilateral-tonic seizures. Reference Beniczky, Wiebe and Jeppesen6 Both the International League Against Epilepsy and the International Federation of Clinical Neurophysiology recommend using validated devices for the detection of generalized tonic-clonic seizures and focal to bilateral tonic-clonic seizures, but not other seizure types (weak/conditional recommendation). Reference Beniczky, Wiebe and Jeppesen6 In addition, more than half of caregivers in the cohort discontinued devices over time due to a number of factors such as poor seizure detection, high false alarms, disruptive sleep, etc. Reference Maltseva, Winterburn and Wasserman5 Thus, this further emphasizes limitations with current seizure monitoring devices and the need for tailored physician guidance/education when counseling around device use in PWE.
Overall, Maltseva et al. provide important insights into the current landscape of seizure monitoring devices; however, there is a pressing need for increased awareness, advocacy/funding and medically approved device access nationally for PWE and their caregivers. Reference Maltseva, Winterburn and Wasserman5
Acknowledgments
None.
Competing interests
RW has previously received consulting fees from Jazz Pharmaceuticals and Pendopharm. PJ has no disclosures.
Ethics approval statement
Not applicable.