Seizure detection watch improves quality of life for adolescents and their families.

This article reports the findings from a pilot study conducted to explore the impact of using a wearable seizure detection device on quality of life for 10 adolescents with epilepsy and their parents. Quality of life in Epilepsy for Adolescent (QOLIE AD-48) and the Parent Response to Child Illness (PRCI) Scale were compared at study onset and 6 months after using the SmartWatch seizure detection device. At the conclusion of the study, a qualitative interview explored the adolescent's and parent's experiences with using the device. In this sample, the wearable seizure detection device was well accepted as a means to increase seizure safety for both adolescents and their caregivers. In addition, adolescents and parents felt more secure with the adolescent increasing independent activities when wearing the watch. Barriers to use included technical difficulties, such as false alarms, and the burden of adding another aspect to their epilepsy care. While these data cannot be generalized to all populations, findings suggest that further research with wearable seizure detection devices is warranted. Considering current sudden unexplained death from epilepsy (SUDEP) prevention guidelines that encourage seizure monitoring, especially during sleep, the wearable seizure detection device may provide adequate seizure monitoring without the negative consequences to the adolescent's developing autonomy.

SUDEP and seizure safety communication: Assessing if people hear and act.

BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is a leading cause of death among people with chronic epilepsy. People with intellectual disability (ID) are overrepresented in this population. The SUDEP and Seizure Safety Checklist ("Checklist") is a tool to discuss risk factors influencing seizures and the risk of SUDEP. It includes questions about the availability of nocturnal monitoring. In Cornwall UK, people with epilepsy and ID and their relatives and carers are routinely advised to consider nocturnal surveillance to reduce harm from potential nocturnal seizures. We assessed the retention of advice provided on nocturnal monitoring and if there were differences between those in residential care and those living with their families. METHODS: A postal questionnaire was sent to carers of all people with epilepsy and ID in Cornwall followed by the adult specialist ID epilepsy service. All those who were contacted had received the same advice on SUDEP and nocturnal monitoring at least once in the past year. Each person was categorized into living in a residential setting or with their family group. Intergroup differences were compared using Fisher's exact test. RESULTS: Carers for 170 people were contacted and 121 responded (71%). The family group had statistically more nocturnal seizures than the residential group. While there was no difference in the awareness of SUDEP, the groups differed in their recollection of the person-centered discussion of risk with carers in residential setting being less aware. Where nocturnal monitoring advice was given, it was followed, and previously unknown seizures were identified in 75%. CONCLUSIONS: Carers in residential settings are less likely to recall specific person-centered discussion of risks to the individual they support as compared with those living with families although general awareness of SUDEP and implementing advice such as nocturnal monitoring is present equally in both groups. In improving detection of nocturnal seizures, audio monitoring may be a useful strategy to reduce risk of harm for people with ID.

Sudden unexpected death in epilepsy: measures to reduce risk.

This review looks at the strategies that may help to reduce the risk of sudden unexpected death in epilepsy beyond that of trying to achieve seizure cessation, which is not possible for up to 30% of patients with epilepsy. These strategies include seizure safety checklists, mobile phone technology, telehealth and various devices currently available or in development. We highlight interventions where there is evidence of benefit, and draw attention for the need both to involve patients with epilepsy in risk reduction and to improve communication with those at risk.

Risk estimation of SUDEP during COVID-19 pandemic era in a tertiary referral center.

OBJECTIVE: No data exist regarding the impact of the lockdown due to the COVID-19 pandemic on the risk factors of sudden unexpected death in epilepsy (SUDEP). This study aimed to stratify risk factors of SUDEP in relation to COVID-19 lockdown, among patients with epilepsy (PWE) in Cairo University epilepsy unit (CUEU). Therefore, we can detect risk factors and mitigate such factors in the second wave of the virus. METHODS: an observational, cross-sectional study carried on 340 Egyptian patients with active epilepsy. Individual risk identification and stratification was done by using The SUDEP and seizure Safety Checklist, after which sharing risk knowledge to PWE and their caregivers was undertaken. RESULTS: The mean age of patients was 29.72 ± 12.12. The median of the static factors was 4 (IQR 3-5) whereas, the median of the modifiable factors was 2 (IQR 1-3). Epilepsy emergencies (serial seizures or status epilepticus) were reported in 24.1 % of patients, for which non-compliance was the commonest cause, followed by deferral of epilepsy surgery for patients with drug resistant epilepsy (DRE). Stepwise logistic regression analysis showed that use of anxiolytic medications, non-compliance, keeping patients with DRE on dual anti-seizure medications (ASMs), or adding third medication increased the odds of increased seizure frequency by 2.7, 3.5, 16.6 and 6.1 times, respectively. CONCLUSION: Some COVID-19 related issues had influenced the risk of seizure worsening including postponing epilepsy surgery for patients with DRE, non-compliance, and psychiatric comorbidities. Special attention should be paid to these issues to mitigate the risk of SUDEP.

Sounds of seizures.

PURPOSE: A phase I feasibility study to determine the accuracy of identifying seizures based on audio recordings. METHODS: We systematically generated 166 audio clips of 30 s duration from 83 patients admitted to an epilepsy monitoring unit between 1/2015 and 12/2016, with one clip during a seizure period and one clip during a non-seizure control period for each patient. Five epileptologists performed a blinded review of the audio clips and rated whether a seizure occurred or not, and indicated the confidence level (low or high) of their rating. The accuracy of individual and consensus ratings were calculated. RESULTS: The overall performance of the consensus rating between the five epileptologists showed a positive predictive value (PPV) of 0.91 and a negative predictive value (NPV) of 0.66. The performance improved when confidence was high (PPV of 0.96, NPV of 0.70). The agreement between the epileptologists was moderate with a kappa of 0.584. Hyperkinetic (PPV 0.92, NPV 0.86) and tonic-clonic (PPV and NPV 1.00) seizures were most accurately identified. Seizures with automatisms only and non-motor seizures could not be accurately identified. Specific seizure-related sounds associated with accurate identification included disordered breathing (PPV and NPV 1.00), rhythmic sounds (PPV 0.93, NPV 0.80), and ictal vocalizations (PPV 1.00, NPV 0.97). CONCLUSION: This phase I feasibility study shows that epileptologists are able to accurately identify certain seizure types from audio recordings when the seizures produce sounds. This provides guidance for the development of audio-based seizure detection devices and demonstrate which seizure types could potentially be detected.

Seizure and Sudden Unexpected Death in Epilepsy (SUDEP) characteristics in an urban UK intellectual disability service.

PURPOSE: This study identifies epilepsy-related characteristics and SUDEP risk factors in people with epilepsy (PWE) attending an urban community ID service in the UK where managing epilepsy is not part of the service remit, to understand the care provided to this vulnerable population. METHODS: An electronic database search in a north London community ID service (catchment population approx. 290,000) identified relevant ID/epilepsy characteristics in PWE to compare those with mild ID to moderate-profound ID. The SUDEP and Seizure Safety Checklist ("Checklist"), was administered to patients and families/carers. Risk management data was compared to similar data from Cornwall UK where PWE are supported within the ID service and the Checklist is used annually. RESULTS: One fifth (137/697) of people attending the service had epilepsy. Over 3/4 had moderate-profound ID. Neurodevelopmental disorders were coexistent in 2/3, psychiatric conditions in 1/3 (1/4 of which was psychosis). The mean number of anti-seizure drugs was 1.45 ± 0.98, and 1/4 were taking psychotropic medications. Over a third did not have an epilepsy care plan. None contacted (n = 103) had SUDEP awareness. The median number of Checklist risk factors was seven (IQR 4.5-9). A third had experienced seizures lasting >5 min or status epilepticus. In comparison to the Cornish ID data significant differences were evident in four of seven modifiable risk factors. CONCLUSIONS: This real world study highlights the complexity and risks among PWE and ID. The lack of a "joined up" approach can undermine the safety of this vulnerable population. Person-centred risk communication and care plans are easily achievable and essential.

Safe and sound? A systematic literature review of seizure detection methods for personal use.

PURPOSE: The study aims to review systematically the quality of evidence supporting seizure detection devices. The unpredictable nature of seizures is distressing and disabling for sufferers and carers. If a seizure can be reliably detected then the patient or carer could be alerted. It could help prevent injury and death. METHODS: A literature search was completed. Forty three of 120 studies found using relevant search terms were suitable for systematic review which was done applying pre-agreed criteria using PRISMA guidelines. The papers identified and reviewed were those that could have potential for everyday use of patients in a domestic setting. Studies involving long term use of scalp electrodes to record EEG were excluded on the grounds of unacceptable restriction of daily activities. RESULTS: Most of the devices focused on changes in movement and/or physiological signs and were dependent on an algorithm to determine cut off points. No device was able to detect all seizures and there was an issue with both false positives and missed seizures. Many of the studies involved relatively small numbers of cases or report on only a few seizures. Reports of seizure alert dogs are also considered. CONCLUSION: Seizure detection devices are at a relatively early stage of development and as yet there are no large scale studies or studies that compare the effectiveness of one device against others. The issue of false positive detection rates is important as they are disruptive for both the patient and the carer. Nevertheless, the development of seizure detection devices offers great potential in the management of epilepsy.