ArticleEpilepsia open2019
Seizure burden in severe early-life epilepsy: Perspectives from parents.
Article in Epilepsia open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Short-Term Impact of Seizures and Mitigation Opportunities.Current neurology and neuroscience reports · 2024Pooled it
- Atonic seizures in children: a meta-analysis comparing corpus callosotomy to vagus nerve stimulation.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2021Pooled it
- Trial
- The Burden of Epilepsy: The Contribution of Seizures (AES 2025 Presidential Symposium).Epilepsy currents · 2026Article
- Neurocognitive, behavioral, and treatment burden as key predictors of parental stress in pediatric epilepsy.Epilepsia · 2025Article
- Article
- The impact of nursing intervention on the care burden experienced by mothers of children with epilepsy: a family-centered empowerment model.BMC nursing · 2025Article
- Organizational and behavioral models in the management of patients with developmental and epileptic encephalopathy, Lennox-Gastaut syndrome and Dravet syndrome in Italy: a focus on the transition from pediatric to adult care.Frontiers in health services · 2025Article
- The impact of developmental and epileptic encephalopathies on families: a qualitative study.European journal of pediatrics · 2024Article
- Epilepsy in rural South Africa: Patient experiences and healthcare challenges.Epilepsia open · 2024Article
- Exploration of health care providers' knowledge-based care and support given to family members and caregivers of people living with epilepsy.Frontiers in psychology · 2024Article
- Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.Epilepsy & behavior : E&B · 2023Article
- It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support.Neuropsychiatric disease and treatment · 2023Article
- Correlates of Caregiving Burden among Bedouin-Muslim Mothers of Children Diagnosed with Epilepsy.International journal of environmental research and public health · 2022Article
- Parent Mental Health and Family Coping over Two Years after the Birth of a Child with Acute Neonatal Seizures.Children (Basel, Switzerland) · 2021Article
- Impact of intellectual and developmental disability on quality-of-life priorities in adults with epilepsy.Epilepsy & behavior : E&B · 2021Article
- Comment on "Cost-Effectiveness of Cannabidiol Adjunct Therapy Versus Usual Care for the Treatment of Seizures in Lennox-Gastaut Syndrome".PharmacoEconomics · 2021Article
- Investigation of Anxiety, Depression, Sleep, and Family Function in Caregivers of Children With Epilepsy.Frontiers in neurology · 2021Article
- Seizure burden in severe early-life epilepsy: Perspectives from parents.Epilepsia open · 2019Article
Corrections and comments
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Authors and funding
13 authors.
Funding
Abstract
objectivesSeizure burden is typically measured by seizure frequency yet it entails more than seizure counts, especially for people with severe epilepsies and their caregivers. We aimed to characterize the multi-faceted nature of seizure burden in young people and their parents who are living with severe early-life epilepsies.
methodsA one-day workshop and a series of teleconferences were held with parents of children with severe, refractory epilepsy of early-life origin and providers for children with epilepsy. The workshop sessions were structured as focus groups and aimed to identify components of seizure burden and their impact from the perspective of parents and providers. Data were gathered, organized, and refined during the workshop using an iterative 4-step process that drew upon grounded theory.
resultsThree primary components of seizure burden were identified: frequency, severity, and unpredictability, which was as important if not more important at times than frequency and severity. Caregivers noted that the impacts of seizures were experienced as acute-immediate consequences, longer-term consequences, and as chronic effects that develop and evolve over time. The severity of the child's neurological and medical status as well as where in the disease journey a family was represented additional contextual factors that influenced the experience of seizure burden. SIGNIFICANCE: Patient-reported and patient-centered outcomes are increasingly incorporated into the evaluation of treatment effectiveness. Without understanding how the disease creates burden for the patient (or family), it is difficult to know how to assess the impact of treatment. Our preliminary findings indicate seizure burden is a complex construct and unpredictability can be as important as frequency and severity.
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