Highlights
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• Monitoring device use was primarily driven by caregivers, with limited physician recommendations.
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• Many expressed a strong interest in using monitoring devices, yet a lack of knowledge was the main barrier.
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• Families commonly used non-approved devices, emphasizing the need for clinical guidance while being aware of their benefits.
Introduction
Sudden unexpected death in epilepsy (SUDEP) remains one of the most feared outcomes for patients with epilepsy and their caregivers. Reference Pallotto, Shellhaas and Maney1 It is the leading cause of epilepsy-related mortality in children, with an incidence of approximately 1.2 per 1000 pediatric epilepsy years. Reference Sillanpää and Shinnar2–Reference Keller, Whitney, Li, Pollanen and Donner5 Risk factors for SUDEP include the presence of bilateral tonic–clonic and nocturnal seizures, genetic predisposition and non-adherence to anti-seizure medications (ASMs). Reference Whitney, Sharma and Ramachandrannair6 Pediatric-specific risk factors are not fully elucidated but could include severe epilepsy, high seizure frequency, structural abnormalities and multiple ASM therapies. Reference Whitney, Sharma and Ramachandrannair6,Reference Abdel-Mannan, Taylor, Donner and Sutcliffe7
Informing families of this risk is essential, yet without mitigation strategies, discussions often provoke overwhelming stress and anxiety. Reference Long, Cotterman-Hart and Shelby8 Studies have shown that the majority of patients wished to be informed about SUDEP. Reference Xu, Ayyappan and Seneviratne9 However, only 2.7%–16.0% of health professionals consistently discuss SUDEP with their patients. Reference Watkins, Ashby, Hanna, Henley, Laugharne and Shankar10 Some identified barriers to SUDEP discussions included limited evidence-based information regarding risk mitigation, a lack of modifiable risk factors and apprehension about causing undue stress for families. Reference Maney, Pallotto and Bansal11
In a study by Pallotto et al., caregivers discussed the value of monitoring devices, as they provide an opportunity for early intervention, and voiced that they would appreciate information in the context of SUDEP discussions. Reference Pallotto, Shellhaas and Maney1 Caregivers specifically asked for resources that were free of jargon, data-driven and included infographics to aid accessibility. Reference Pallotto, Shellhaas and Maney1 We believe that seizure-monitoring devices could be a valuable mitigation tool to assist SUDEP conversations, as they can alleviate some of the burden by providing caregivers with real-time alerts in critical situations. Reference Komal, Cleary, Wells and Bennett12 While no device has been proven to reduce the SUDEP mortality rate, Reference Baumgartner, Baumgartner, Lang, Lisy and Koren13 it is relevant to highlight that, due to the low incidence, it is highly impracticable to test the effect of a single intervention in a randomized controlled trial. Reference Ryvlin, Ciumas, Wisniewski and Beniczky14 Device costs, possible false-alarm rates and seizure-type applicability must be considered in individual discussions. With device availability varying by practice location, it might be challenging for healthcare professionals to stay up to date with the evolving landscape and navigate the overall accessibility.
Available seizure detection devices can be categorized based on their assessment of movement or physiological signals. Reference Ulate-Campos, Coughlin, Gaínza-Lein, Fernández, Pearl and Loddenkemper15 While motor components are detected by, for example, actigraphy, accelerometers or surface Electromyography (EMG), ictal activation of the autonomic nervous system can be measured, for example, by heart rate monitors or electrodermal activity sensors. Reference Baumgartner, Baumgartner, Lang, Lisy and Koren13–Reference Nijsen, Arends, Griep and Cluitmans16 They can further be divided into devices that are cleared for medical use or seizure detection and those that have no certification. For instance, camera systems, which are empirically used by caregivers, may deliver detailed insights into seizure morphology, frequency and duration, empowering caregivers to make informed decisions regarding safety measures and the patient’s treatment and health.
Rapid alerts may help prevent prolonged or clustered seizures and reduce the risk of injury by enabling a proactive response when seizures occur, Reference Hadady, Klivényi, Fabó and Beniczky17 thereby providing families with peace of mind, potentially enhancing patient and family confidence and improving overall quality of life. Reference Hoppe, Poepel and Elger18 Despite parents feeling confident that their children are seizure-free, studies have shown that seizure frequency is often underreported, particularly when seizures occur during sleep. Reference Blum, Eskola, Bortz and Fisher19–Reference Von Elm, Altman, Egger, Pocock, Gøtzsche and Vandenbroucke21 Reliable seizure detection might help physicians optimize antiepileptic treatment, which could in turn reduce the risk of SUDEP. Reference Ryvlin, Ciumas, Wisniewski and Beniczky14
Despite over 20 devices being marketed in North America and Europe, little is known about which technologies are used in Canada and how well they meet the needs of caregivers and patients. Pediatric patients might face additional challenges, as approved detection models may be unsuitable in terms of size, or detection algorithms and ranges have to be specifically adapted for children. Currently, no device can detect all seizure types, and there is no standardized method of comparing regional variability and user experience. Reference Ulate-Campos, Coughlin, Gaínza-Lein, Fernández, Pearl and Loddenkemper15 This study, therefore, assesses device experiences and needs among Canadian, more specifically, Albertan, caregivers. This information allows us to provide caregivers with an overview of real-life options for different seizure types and structured information that can help families make informed decisions. Ultimately, this could increase the comfort of talking about topics such as SUDEP, help with mandatory education, increase awareness and decrease patients’ and caregivers’ anxiety.
Methods
For this cross-sectional study, between November 2023 and January 2025, participants were recruited through multiple methods, including physician referrals at the Alberta Children’s Hospital pediatric neurology clinic and electroencephalogram department (which primarily serve patients from Western Canada), institutional email distribution lists, the Epilepsy Association of Calgary newsletter and social media platforms (e.g., Facebook epilepsy support groups).
The study targeted caregivers of pediatric patients with epilepsy, who are commonly aged between 0 and 18 years; however, in single cases, patients may be up to 20 years due to extended transitioning times. Mature minor patients had the option to complete the survey together with their guardian. Each participant signed a consent form after reading informational material regarding the study’s purpose and details. Participation was voluntary and anonymous. No information that could reveal the patient’s or caregiver’s identity was collected.
The study consisted of an online questionnaire administered through a survey platform named Qualtrics®. The inclusion criterion was a caregiver’s confirmation that the child had a diagnosis of epilepsy, confirmed by the first survey question. If caregivers answered that their child did not have an epilepsy diagnosis, the survey was terminated. The questionnaire contained a total of 52 questions and was developed by our study team, who have extensive experience with caregiver studies. It was divided into a general part regarding demographics, epilepsy characteristics, such as types of seizures experienced by the child, device usage experience, preferences for device-based seizure-monitoring technologies and caregivers’ knowledge of SUDEP, which was filled out by all caregivers. A follow-up section queried prior device users about their experiences, while non-users were asked about their preferences and motives separately. The survey included both closed and open-ended questions; closed questions featured list-based responses, multiple-choice options and Likert scales (1–4: not important, not very important, important, very important). To facilitate responding to the survey and increase accessibility, we defined “big seizures” as seizures with strong body movements, which could include, for example, bilateral tonic–clonic seizures, clonic seizures or tonic seizures. “Small seizures” were defined as seizures without strong body movements, which could include, for example, focal impaired consciousness seizures or absence seizures.
“Aimless walking” seizures were defined as focal impaired consciousness seizures with walking automatism.
Variables of interest were summarized using the mean, median, range and standard deviation (SD). As the data was non-normally distributed, to compare predictors of the use of monitoring, the Mann–Whitney U test was used for continuous variables, and the chi-square test was used for categorical variables. A two-sided significance level of p = 0.05 was used in all statistical analyses, and data were analyzed using IBM SPSS Statistics (Version 29.0.1.1). The study obtained ethical approval from the local Research Ethics Board (REB: 23-1032). The STROBE guidelines were closely followed during the conduct and reporting of this study. Reference Herrera-Fortin, Bou Assi, Gagnon and Nguyen22
Results
Participant characteristics
We received a total of 141 responses, of which 112 participants completed the survey and were included in this study. An overview of sociodemographic and clinical characteristics can be found in Table 1.
Table 1. Sociodemographic and clinical characteristics
*Mean ± standard deviation.
“Big seizures” were defined as seizures with strong body movements, which could include, for example, bilateral tonic–clonic seizures, clonic seizures or tonic seizures.
Co-sleeping arrangements
Most caregivers (61.6%) reported that their child slept in their own room and bed, while 17.0% shared a bed with their parents, 14.3% slept in the parents’ bedroom but in their own bed and 7.1% mostly slept alone in their own bed but slept with the parents in special situations (Figure 1). Overall, 38.4% of caregivers reported some form of co-sleeping with their child, which was significantly more common among children who exhibited aimless walking (21.4%) as a seizure symptom (p = 0.046).
Figure 1. Co-sleeping patterns of children diagnosed with epilepsy with their caregivers.
Epilepsy characteristics and disease burden
Seizures occurred during both wakefulness and sleep in 49.1% of patients; 43.8% had seizures only when awake, and 7.1% had seizures only when asleep (Figure 2A).
Figure 2. Epilepsy characteristics and disease burden. (A) Percentage of seizures occurring during wakefulness and sleep. (B) Prevalence and frequency of children with “big seizures” (seizures with strong body movements). (C) Percentage of children using anti-seizure medications. (D) Rescue medication administration in the past 12 months.
Regarding the use of ASM, 13.4% of patients did not take any ASMs, 33.0% took one ASM, 26.8% took two ASMs and 26.8% took three or more ASMs (Figure 2C).
In the last 12 months before filling out the questionnaire, most caregivers did not have to administer rescue medication (71.4%), while 28.6% had to administer rescue medication at least one time. More specifically, 5.4% of caregivers administered medication only once, 7.1% administered twice, 3.6% administered three times and 12.5% administered four or more times (Figure 2D).
Caregiver confidence
Caregiver confidence in detecting all seizures was also variable: 36.6% thought they saw their child’s seizures sometimes, but not all of them, 35.7% did not think they noticed all their child’s seizures and 27.7% thought they noticed all their child’s seizures. Common additional features accompanying a seizure included changes in breathing (74.1%), vocalizations (55.4%), changes in heartbeat (53.6%), aimless walking (21.4%) and vomiting (4.5%), with multiple answers possible (Figure 3). “Aimless walking” seizures were defined as focal impaired consciousness seizures with walking automatism.
Figure 3. Additional seizure symptoms observed by caregivers.
SUDEP awareness
Of all the participants, 62.5% of caregivers had heard of SUDEP; of those, only 14.3% of the physicians recommended to use a seizure-monitoring device. A total of 42.9% heard of SUDEP from their doctor, while 25.9% searched for information by themselves, 8.9% received information from a patient’s initiative or self-support groups and 5.3% received information through other sources, such as educational pamphlets. Of those patients who had no previous experience with seizure-monitoring devices, only 11.1% were ever recommended seizure-monitoring devices by physicians.
Seizure-monitoring device utilization patterns
Next, we investigated the population’s previous experience with seizure-monitoring devices. Of all participants, 35.7% (n = 40) had used a device to record or identify seizures in their child, while 64.3% (n = 72) did not. On average, the device was used for over 5.0 years (SD 3.5; range 0.3–13.0). Monitoring was applied during various conditions such as sleep (67.5%), during and after seizures (40.0%), during wakefulness (30.0%) and in special situations including times of sickness (20.0%), as shown in Figure 4.
Figure 4. Seizure-monitoring device usage during sleep, seizures, wakefulness, and other situations.
Of the devices used, camera systems were by far the most common (50.0%), followed by vital sign monitors (20.0%), fitness wristbands and Embrace2 (10.0% each), SAMi (8.0%) and advanced baby monitors with belly-movement detectors (5.0%), with multiple answers possible, as seen in Figure 5. Of all participants who used devices, 55.0% stated that the monitoring device achieved satisfaction with the most important reason, identified in Figure 6, and 47.5% continued to use the device.
Figure 5. Types of seizure-monitoring devices used and their distributions (N = 40).
Figure 6. Caregivers’ motivations for monitoring their child’s seizures, ranked from highest to lowest priority. SUDEP = sudden unexpected death in epilepsy.
Seizure-monitoring motivations
Caregivers were asked to rate a list of possible motivations for seizure monitoring on a five-point Likert scale from “not very important” to “extremely important.” As shown in Figure 6, identifying SUDEP and other life-threatening situations was reported as the most important reason to monitor their child’s seizures at home. The next most important reason was to alert the parents to check on their child and, lastly, to continue monitoring for safety after the seizure. The least important reason was to determine the end of a seizure.
In general, monitoring device usage was significantly associated with knowledge of SUDEP (chi-square; p = 0.039). Caregivers with SUDEP knowledge were more likely to accept an unlimited amount of false alarms or not more than one false alarm per day (p = 0.018). It was also associated with the occurrence of seizure symptoms such as changes in heartbeat (chi-square; p = 0.037) and changes in breathing (chi-square; p = 0.005). Caregivers of patients with “big seizures” were more likely to wish to have a detection of a sudden increase in heart rate as an additional seizure symptom (chi-square; p = 0.028); however, no significant difference in device use was seen between patients with and without “big seizures” (p = 0.352). Patients with “small seizures” (seizures without strong body movements) were also more likely to be worried about the reliability of seizure detection (chi-square; p = 0.048).
In exploratory analyses of seizure features and device choice, we saw that caregivers who used vital sign monitors had children with more frequent changes in breathing during a seizure (Mann–Whitney U; exact significance 2-sided p = 0.035). Caregivers who used fitness wrist bands had children with more frequent seizures with strong body movements (Mann–Whitney U; exact significance 2-sided p = 0.044). Caregivers who reported heartbeat and breathing changes during a seizure were more likely to prefer devices that detect oxygen saturation as an additional seizure symptom (chi-square; p = 0.002 and p = 0.043, respectively).
In our survey, a follow-up question on the statements in Figure 6 asked whether the device helped to achieve the most important reason, with possible answers “yes” or “no.” When analyzing the answer “yes” in combination with the device type descriptively, we found that Embrace2 users said “yes” in n = 3/4 cases (75.0%), followed by SAMi (66.7%, n = 2/3) and camera systems (65.0%, n = 13/20). Lower rates of device helping to achieve the most important reason were reported for vital sign monitors (50.0%, n = 4/8), fitness wristbands (50.0%, n = 2/4) and advanced baby monitors (50.0%, n = 1/2). Chi-square analysis showed that this distribution was not statistically significant for each test, respectively.
Caregivers without device experience
Among caregivers without prior device experience, 80.6% expressed interest in using electronic monitoring to record or identify seizures in their child, yet 88.9% of this cohort reported that their physician had never suggested trying such devices. Further chi-squared analyses showed that interest varied by seizure types: caregivers of children with nocturnal seizures were significantly more likely to say they would like to use a device (p = 0.050), as were those whose children exhibited heartbeat changes (p = 0.002) or changes in breathing (p = 0.043), both of whom were more likely to wish for oxygen saturation detection as additional seizure detected by device. Of all caregivers without monitoring experience, 60.0% preferred devices that record “small seizures” (without strong body movements) over those with strong body movements (53.0%). Finally, the main barriers to device use included concerns about the uncertain reliability of seizure detection (19.4%) and device affordability (16.7%). Further reasons caregivers chose not to monitor their child at all are presented in Figure 7.
Figure 7. Barriers to initiating seizure-monitoring devices among non-user caregivers.
Device discontinuation
Among caregivers who had monitoring experience, 52.5% discontinued device usage and reported the following issues: seizures not being recognized as such (15.0%), too frequent false alarms (15.0%), disturbance of parental sleep quality (7.5%), privacy concerns (2.5%), child’s sleep quality (2.5%), the device not fitting the child (2.5%) or child reluctance to wear the device (2.5%) and other reasons (15%) (child wanted privacy from camera, caregiver did not know wearables existed, device was not suitable for the seizure type, child stopped having seizures but device was working well, had broken cord and was no longer needed), multiple answers possible. This also differed by seizure type; for example, caregivers of patients with small seizures often had the technical problem that their device did not work or did not trigger an alarm (chi-square; p = 0.028) and discontinued the device because it disturbed the children’s sleep (chi-quare; p = 0.033).
Discussion
This study provides key insights into caregivers’ experiences with seizure monitoring and devices, as well as the needs of non-users. About one-third of the 112 participants had experience with monitoring devices; however, most of them chose non-approved, improvised systems. We also demonstrated a high demand to employ a monitoring device among caregivers without previous experience, with a lack of knowledge on the existence and seizure-type applicability being the main barriers to device use. Our study provides an overview of factors significantly influencing device choice, along with a caregiver-friendly brochure summarizing the preferences identified in our study and the seizure-monitoring devices accessible in Canada, which can be used to support discussions with healthcare professionals.
Monitoring experiences
Of the 112 caregivers, more than one-third (n = 40) had used a device to record or identify seizures in their child; however, only 11.1% of these caregivers had previously received a physician recommendation to consider device use. SUDEP awareness was high in this cohort, and caregivers reported that identifying potential life-threatening situations was one of the main reasons for employing device-based seizure monitoring. Moreover, it was also significantly associated with monitoring device use, and caregivers with SUDEP awareness were also more likely to tolerate false alarms when using monitoring devices. In contrast, Herrera-Fortin et al. demonstrated in a Canadian study with a similar approach that only 8%–15% had previous experience with monitoring devices; however, their cohort included patients of all ages with a substantially higher age mean. Reference Bruno, Simblett and Lang23 Specifically, adults were included, and it is important to note that the motivation for purchasing a device as an adult epilepsy patient might differ significantly from that of a child caregiver. It would also be interesting to compare whether SUDEP awareness is generally a factor that drives parents to choose monitoring and whether this could be proven in future studies. Meanwhile, in the group of non-users, our cohort reported wanting to use electronic devices to record or identify seizures in their child, but 88.9% of physicians never suggested trying a monitoring device. Reasons for physician hesitancy could be limited knowledge of device availability, additional administrative burden and, thus, reluctance to commit to a clear recommendation. However, all these reasons are speculations, and further interpretation is limited since this study did not survey physicians. The finding of caregiver interest in monitoring has been seen throughout the literature. Bruno et al. showed that despite concerns around accuracy, data confidentiality and technical support, people with epilepsy continue to want to use digital technology, and caregivers perceived a reduction of their workload and anxiety. Reference Maltseva, Schubert-Bast and Zöllner24 In our population, we observed that 38.4% of caregivers reported some form of co-sleeping with their child. These co-sleeping patterns are often motivated by safety concerns but can also negatively impact sleep quality and quality of life. This was demonstrated by a prospective multicenter study on caregivers of patients with Dravet syndrome, which showed that worsened sleep quality correlated with caregiver anxiety. Reference Atwood and Drees25 Providing parents with alternative options can substantially contribute to improved quality of life and will, in turn, benefit the patients.
Factors influencing device choice
Despite the existing variety of monitoring devices, the majority still used non-approved or improvised monitoring systems, such as cameras (58%) and vital sign monitors (20%). One obstacle is that only a small fraction of the existing seizure detection devices is available in Canada, let alone approved by Health Canada. When caregivers were asked about satisfaction, no device was significantly more likely to be perceived as meeting their primary monitoring goals. This may be influenced by the small sample sizes when analyzing subcohorts for individual devices, resulting in limited statistical power, as well as the reliance on self-reported satisfaction rather than objective measures of device accuracy. While non-approved devices (such as cameras and pulse oximeters) appeal with accessibility and lower costs, this may reflect their limited accuracy, reliability and scope of detection.
Various factors influenced the choice of devices in our study. Surprisingly, nocturnal seizures were not significantly associated, even though most parents preferred to monitor mainly during sleep. However, in the group without any device experience, caregivers of children with nocturnal seizures were significantly more likely to indicate that they would like to use a device. One conclusion could be that seizure monitoring is equally important to caregivers who actually use a device, regardless of seizure timing.
Although most approved devices are designed for convulsive seizures, Reference Beniczky, Wiebe and Jeppesen26 our data showed that caregivers did not limit their choice to depend on seizure type, as there was no significant difference in monitoring between patients with or without motor symptoms during seizures. However, patients with “small seizures,” such as focal impaired consciousness seizures, significantly more often experienced the problem that their device did not work or did not trigger an alarm and discontinued the device because it disturbed the children’s sleep. Nonetheless, most caregivers reported that their children experienced trackable symptoms during seizures – such as changes in breathing, vocalization or heart rate – which significantly influenced their choice of device. For example, children with breathing or heart rate changes were more likely to use vital sign monitors, while those with pronounced body movements tended to prefer fitness bands. It should be emphasized that those symptoms may offer a way to detect non-motor seizures.
While a considerable proportion of caregivers reported discontinuing devices due to unreliable seizure detection, a high number of false alarms and impaired sleep quality, other reasons – such as unsuitability for specific seizure types or unawareness of potentially better-suited devices – could be addressed through structured information and guidance. Importantly, nearly half of all device users (48%) continued using their devices over multiple years, highlighting the sustained demand for such tools. These findings underscore the importance of further exploration by medical technologists who develop seizure detection devices, as well as the need for physicians to consider these options when counseling their patients about existing options.
Non-user preferences
Among caregivers without monitoring experience, 60.0% would prefer a device that could record small seizures without strong body movements over those with strong body movements (53.0%), which could be explained by the fact that those seizures are less obvious and harder to track. Improving the accuracy of seizure reports may support treatment optimization and thereby indirectly influence SUDEP risk. Reference Ryvlin, Ciumas, Wisniewski and Beniczky14 Interestingly, the fact that models might be less suitable for children in terms of size was only a minor concern for caregivers. Of non-users, the main barriers for not using a device were not being sure the device was applicable to their seizure type (24.3%) or simply not knowing that such devices exist (21.4%), followed by concerns about the uncertain reliability of seizure detection and device affordability. Further research has shown similar findings with non-users attributing their choice to uncertainty about the usefulness of this technology in epilepsy care. Reference Maltseva, Schubert-Bast and Zöllner24 This strongly indicates a lack of knowledge and could be resolved by physicians implementing a counseling routine on this topic.
Future considerations and limitations
Several factors may have influenced the reliability of our findings. First, a high proportion of participants reported a history of status epilepticus (SE), which may reflect selection bias, as families with more traumatic seizure events may have been more likely to participate in this study. Moreover, a substantial part of the recruitment was conducted in the clinics of a tertiary center, where caregivers might be more informed and the patient population more refractory. Future studies may employ a broader approach, including patients followed in the community. Additionally, parents, especially those completing the survey from a link, might have difficulty accurately distinguishing SE from other prolonged events, potentially leading to overreporting of SE. Self-reported seizure frequency might be inaccurate, and while about one-third of people with epilepsy become refractory, a median of one seizure day per month indicates that our study cohort might be skewed toward a higher disease burden. Finally, while device availability is generalizable across Canada, specific preferences may vary by geographic region or socioeconomic factors. Nonetheless, our study applied a pragmatic approach to analyze the local landscape of families’ needs and experiences.
Addressing the need for educational resources, we have conducted a comprehensive literature review and compiled device options available in Canada. We developed a caregiver-friendly brochure, specifying U.S. Food and Drug Administration (FDA) or Health Canada approval, costs, clinical studies and suitability for each device. All materials can be found in the supplemental material (Appendices 1 and 2) and are available for download on our homepage under the following link: https://cumming.ucalgary.ca/research/alberta-children-epilepsy/families/helpful-resources/seizure-monitoring-devices-children
This resource provides empirical guidance and can be used as a practical tool to assist Canadian healthcare professionals in patient care. Given the Canadian healthcare system’s reliance on primary care providers, an important next step to improve national access to devices is to distribute these resources, raise awareness and empower informed decision-making. It is essential to clearly communicate the empirical basis of the brochure’s data and include clinical trial results where appropriate. When counseling families, clinicians should consider that the International League Against Epilepsy and International Federation of Clinical Neurophysiology (ILAE-IFCN) Working Group currently only recommends the use of clinically validated wearable devices for automated detection of generalized or bilateral tonic–clonic seizures when significant safety concerns exist (particularly in unsupervised patients who do not share a bedroom but where alarms can facilitate rapid intervention). The clinical use of currently available wearable devices for other seizure types was not recommended, which is mainly due to insufficient high-quality evidence. Reference Bennett, Bergin and Wells27 Caregivers of children without tonic–clonic seizures should therefore be counseled regarding the current lack of evidence when discussing motivations for monitoring initiation. This study does not provide evidence for SUDEP risk mitigation, and the limitations of monitoring devices, including that fact that no device has been proven to prevent SUDEP, should be clearly emphasized. Further research is needed to address the complex issue of SUDEP prevention and to generate evidence-based risk mitigation strategies. Transparency about these limitations will allow caregivers to make an informed decision about whether the potential benefits of a device trial outweigh its disadvantages. Our resources offer an overview of device selection for different seizure types and a concrete entry point for SUDEP discussions, creating a practical, neutral framework to address nocturnal seizures, seizure frequency and risk mitigation without immediately emphasizing mortality. By shifting the discussion from fear to partnership and shared decision-making, it may restore a sense of control and empowerment, potentially minimizing caregiver distress. Reference Bennett, Bergin and Wells28 Future studies should aim to corroborate caregiver reports with prospective diaries and examine whether increased awareness and the use of structured educational materials produce measurable improvements in anxiety and quality of life.
Conclusion
This study advances our understanding of the motivations and barriers surrounding seizure monitoring in pediatric epilepsy. It reveals critical gaps in clinician-led guidance and limited awareness of available technologies. Notably, many caregivers reported ongoing use and perceived benefit from devices not officially approved for seizure monitoring. The relatively high proportion of experienced users in our cohort may reflect the pediatric focus of the study. Among those without prior device use, there was strong interest in adopting such tools, with particular emphasis on SUDEP prevention and postictal safety. These findings underscore the need for standardized, accessible education on both approved and non-approved monitoring options, enabling families to make informed, patient-centered decisions. Providing caregivers with accessible resources can potentially enhance safety, alleviate anxiety and ultimately improve the quality of life for individuals with epilepsy and their families.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/cjn.2026.10571.
Author contributions
MM has contributed to the conception of the questionnaire and the acquisition, analysis and interpretation of data. MM has also drafted the manuscript and revised it critically for important intellectual content. NW has contributed to the analysis and interpretation of data. NW has also drafted the manuscript, revised it critically for important intellectual content and contributed to the final approval of the version to be published. RW has contributed to patient recruitment and the acquisition of data and revised the manuscript critically for important intellectual content. RC has contributed to patient recruitment and acquisition of data. RC has also drafted the manuscript, revised it critically for important intellectual content and contributed to the final approval of the version to be published. HG has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. PMS has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. YA has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. RD has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. KM has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. JPA has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. SLO has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. MD has contributed to the acquisition of data, revised the manuscript critically for important intellectual content and contributed to the final approval of the version to be published. KAK has contributed to the conception of the questionnaire and the analysis and interpretation of data. KAK has also revised it critically for important intellectual content and contributed to the final approval of the version to be published. JJ has contributed to the conception of the questionnaire and the acquisition, analysis and interpretation of data. JJ has also revised it critically for important intellectual content and contributed to the final approval of the version to be published.
Funding statement
The authors received no financial support for the research, authorship, and/or publication of this article.
Competing interests
MM reports no conflict of interest related to this study.
NW reports no conflict of interest related to this study.
RW reports no conflict of interest related to this study.
RC reports no conflict of interest related to this study.
HG reports no conflict of interest related to this study.
PMS reports no conflict of interest related to this study.
YA reports no conflict of interest related to this study.
RD reports no conflict of interest related to this study.
KM received a research grant investigating transcranial magnetic stimulation (TMS) treatment from the Alberta Children’s Hospital Foundation, a grant from Holland Bloorview for a randomized placebo-controlled trial of sertraline vs. placebo in the treatment of anxiety in children and adolescents with neurodevelopmental Disorders (The CALM Study) and an exploration grant investigating thought control in neurodevelopmental disorders from the Social Sciences and Humanities Research Council. KM is also part of the Chair Mentorship committee at CanNRT.
JPA reports no conflict of interest related to this study.
SLO received royalties for a book publication from Cambridge University Press and is an unpaid editorial board member of Neurology, an unpaid associate editor at Headache and an unpaid editorial board member at the American Migraine Foundation.
MD reports no conflict of interest related to this study.
KAK reports no conflict of interest related to this study.
JJ reports no conflict of interest related to this study.
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