Caregivers’ Experiences and Expectations Regarding Seizure Monitoring and Knowledge on Sudden Unexpected Death in Epilepsy (SUDEP)
Abstract number :
1.342
Submission category :
4. Clinical Epilepsy / 4C. Clinical Treatments
Year :
2024
Submission ID :
967
Source :
www.aesnet.org
Presentation date :
12/7/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Netanya Winterburn, MSc, BSc – University of Calgary, Alberta Children's Hospital
Margarita Maltseva, MD – University of Calgary
Riddhi Chabrotra, BS – Alberta Children's Hospital, University of Calgary
Paola Meza Santoscoy, PhD – University of Calgary
Hanna Grote, MD – University Hospital Bonn
Kerstin Alexandra Klotz, MD – University Hospital Bonn
Julia Jacobs, MD, PhD – University of Calgary, Alberta Children's Hospital, Calgary, AB, Canada
Rationale: The usage of monitoring devices for children with epilepsy can decrease caregiver stress and the risk of SUDEP. Availability of devices depends on geographic region, health insurance coverage and types of seizures that are of interest. This study aims to understand caregivers’ experiences, needs and expectations with device usage in Canada to develop recommendations and improve the applicability of device-based seizure monitoring.
Methods: Caregivers of children with epilepsy completed an online-based survey (Qualtrics®) to assess demographic data, characteristics of epilepsy, any previous experiences, expectations, and concerns with monitoring devices, as well as their knowledge of SUDEP. Descriptive statistics were used to analyze data using SPSS Version 29.0.1.1.
Results: 85 responses were recorded as of May 2024. The median age of patients was 10.5 (SD 4.8; Range 1-18) years, 41.2% were female. Overall, 56.5% of caregivers had heard of SUDEP and 36.5% had seizure monitoring experience. Devices commonly used for monitoring were those with camera functionality (26.2%), baby phones (23.8%) and pulse oximeter/vital sign monitors (11.9%), as demonstrated in Figure 1. Caregivers considered monitoring most important for the following reasons: to identify potential SUDEP/life-threatening situations (80.7%), to sleep better themselves/have peace of mind (77.4%), and to record seizures for documentation (74.2%). For caregivers with monitoring experience, the initiative largely came from the parents themselves (67.7%) and only 12.9% from the attending physician. Of the caregivers without monitoring experience, 82.6% preferred devices that record “small seizures” without strong body movements over those with strong body movements (67.4%). Interest in device-usage was reported by 71.7% however, a majority of caregivers were not aware of devices used for monitoring (29.0%). Additionally, not being able to afford a device (23.7%) and uncertain reliability of seizure detection (18.4%) were indicated (Figure 2).
Conclusions: Caregivers mainly used non-approved devices for seizure detection to prevent life-threatening situations, such as SUDEP, and to improve their sleep quality. Though most caregivers have reported knowledge of SUDEP and expressed interest in monitoring their child, they did not use a device for detecting their child’s seizures. This was reported mainly by parents of patients who experience seizures without strong body movements. Of caregivers that did not have monitoring experience, most were unaware of the existence of these devices, likely due to the small portion of physicians that recommended usage of monitoring devices.
Funding: Canadian Institutes of Health Research (CIHR) #480576
Clinical Epilepsy