A longitudinal, randomized, and prospective study of nocturnal monitoring in children and adolescents with epilepsy: Effects on quality of life and sleep

Borusiak, Peter; Bast, Thomas; Kluger, Gerhard; Weidenfeld, Andrea; Langer, Thor﻿s﻿ten; Jenke, Andreas; Wiegand, Gert

doi:10.1016/j.yebeh.2016.05.035

Cited by 13 publications

(10 citation statements)

References 19 publications

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“…Families decided whether or not to use a device at the start of the study, and the ones who choose to do so, were randomly assigned to a mattress movement sensor or an audio baby monitor. No significant differences were reported in anxiety levels between groups, while QoL and sleep improved in all parents after 5-7 months, irrespective of whether they used a device and which one [30]. This may implicate that newly diagnosed epilepsy has a negative impact on parental QoL and sleep, which gradually stabilizes over time.…”

Section: Discussionmentioning

confidence: 77%

“…For SDD developers, these inter-and intrapersonal differences in requirements may be challenging when designing a generic device. Another long-term prospective study evaluated the effect of nocturnal monitoring on QoL and sleep of parents of children with newly diagnosed epilepsy with validated questionnaires [30]. Families decided whether or not to use a device at the start of the study, and the ones who choose to do so, were randomly assigned to a mattress movement sensor or an audio baby monitor.…”

Section: Discussionmentioning

confidence: 99%

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Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy: A qualitative study

Westrhenen¹,

Lange²,

Hagebeuk³

et al. 2021

Epilepsy & Behavior

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Introduction: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes. Methods: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4-16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis. Results: Twenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems. Conclusion: Healthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care.

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Section: Discussionmentioning

confidence: 77%

Section: Discussionmentioning

confidence: 99%

Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy: A qualitative study

Westrhenen¹,

Lange²,

Hagebeuk³

et al. 2021

Epilepsy & Behavior

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“…Another large study followed families of children with newly diagnosed epilepsy. Those who wanted to use an SDD (approximately half of the families) were randomly allocated to the Epi‐Care or an audio baby monitor 33 . QoL improved significantly over time in all parents, suggesting that QoL increases independently of SDD usage.…”

Section: Discussionmentioning

confidence: 99%

Multimodal nocturnal seizure detection in children with epilepsy: A prospective, multicenter, long‐term, in‐home trial

et al. 2023

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ObjectiveThere is a pressing need for reliable automated seizure detection in epilepsy care. Performance evidence on ambulatory non‐electroencephalography‐based seizure detection devices is low, and evidence on their effect on caregiver's stress, sleep, and quality of life (QoL) is still lacking. We aimed to determine the performance of NightWatch, a wearable nocturnal seizure detection device, in children with epilepsy in the family home setting and to assess its impact on caregiver burden.MethodsWe conducted a phase 4, multicenter, prospective, video‐controlled, in‐home NightWatch implementation study (NCT03909984). We included children aged 4–16 years, with ≥1 weekly nocturnal major motor seizure, living at home. We compared a 2‐month baseline period with a 2‐month NightWatch intervention. The primary outcome was the detection performance of NightWatch for major motor seizures (focal to bilateral or generalized tonic–clonic [TC] seizures, focal to bilateral or generalized tonic seizures lasting >30 s, hyperkinetic seizures, and a remainder category of focal to bilateral or generalized clonic seizures and "TC‐like" seizures). Secondary outcomes included caregivers' stress (Caregiver Strain Index [CSI]), sleep (Pittsburgh Quality of Sleep Index), and QoL (EuroQol five‐dimension five‐level scale).ResultsWe included 53 children (55% male, mean age = 9.7 ± 3.6 years, 68% learning disability) and analyzed 2310 nights (28 173 h), including 552 major motor seizures. Nineteen participants did not experience any episode of interest during the trial. The median detection sensitivity per participant was 100% (range = 46%–100%), and the median individual false alarm rate was .04 per hour (range = 0–.53). Caregiver's stress decreased significantly (mean total CSI score = 8.0 vs. 7.1, p = .032), whereas caregiver's sleep and QoL did not change significantly during the trial.SignificanceThe NightWatch system demonstrated high sensitivity for detecting nocturnal major motor seizures in children in a family home setting and reduced caregiver stress.

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“…Many families change their sleep behaviors to co-sleep or watch their child sleep to respond to nocturnal seizures [47], but this approach becomes increasingly unrealistic as the child ages and as the sleep hygiene of family members deteriorates. In a group of patients with newly diagnosed epilepsy, patient families for whom a monitoring device was utilized saw a reduction in fear of further seizures and co-sleeping when compared to a group without monitoring [48]. The addition of monitoring devices to a patient's care may increase the likelihood of event recognition, particularly in settings where ordinary seizure detection may be compromised.…”

Section: Patient Monitoringmentioning

confidence: 99%

“…Implement patient seizure monitoring system to[43,48,52,53] a. Equip patients with a customized multimodal seizure detection device…”

mentioning

confidence: 99%

Identifying Barriers to Care in the Pediatric Acute Seizure Care Pathway

Jackson

Vasquez

Ojo

et al. 2022

International Journal of Integrated Care

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We aimed to describe the acute seizure care pathway for pediatric patients and identify barriers encountered by those involved in seizure care management. We also proposed interventions to bridge these care gaps within this pathway. Methods:We constructed a process map that illustrates the acute seizure care pathway for pediatric patients at Boston Children's Hospital (BCH). The map was designed from knowledge gathered from unstructured interviews with experts at BCH, direct observation of patient care management at BCH through a quality improvement implemented seizure diary and from findings through three studies conducted at BCH, including a prospective observational study by the pediatric Status Epilepticus Research Group, a multi-site international consortium. We also reviewed the literature highlighting gaps and strategies in seizure care management.Results: Within the process map, we identified twenty-nine care gaps encountered by caregivers, care teams, residential and educational institutions, and proposed interventions to address these challenges. The process map outlines clinical care of a patient through the following settings: 1) pre-hospitalization setting, defined as residential and educational settings before hospital admission, 2) BCH emergency department and inpatient settings, 3) post-hospitalization setting, defined as residential and educational settings following hospital discharge or clinic visit and 4) follow-up BCH outpatient settings, including neurology, epilepsy, and primary care provider clinics. The acute seizure care pathway for a pediatric patient who presents with seizures exhibits at least twenty-nine challenges in acute seizure care management.Significance: Identification of care barriers in the acute seizure care pathway provides a necessary first step for implementing interventions and strategies in acute seizure care management that could potentially impact patient outcomes.

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A longitudinal, randomized, and prospective study of nocturnal monitoring in children and adolescents with epilepsy: Effects on quality of life and sleep

Cited by 13 publications

References 19 publications

Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy: A qualitative study

Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy: A qualitative study

Multimodal nocturnal seizure detection in children with epilepsy: A prospective, multicenter, long‐term, in‐home trial

Identifying Barriers to Care in the Pediatric Acute Seizure Care Pathway

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