ArticleJournal of multidisciplinary healthcare2014
Lennox-Gastaut syndrome: impact on the caregivers and families of patients.
Article in Journal of multidisciplinary healthcare, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 4 of them syntheses that pooled it.
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The trial behind it
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Who cites it
23 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Systematic review of indirect costs to families of children with developmental epileptic encephalopathies.Orphanet journal of rare diseases · 2025Pooled it
- The burden of illness in Lennox-Gastaut syndrome: a systematic literature review.Orphanet journal of rare diseases · 2023Pooled it
- Cannabidiol in conjunction with clobazam: analysis of four randomized controlled trials.Acta neurologica Scandinavica · 2021Pooled it
- Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review.International journal of language & communication disordersPooled it
- Trial
- Neurologists' Views on the Management of Uncontrolled Epilepsy in Spain: A Preliminary Survey.Neurology and therapy · 2026Article
- The Role of Neurologists in the Management of Uncontrolled Epilepsy in Spain: Opportunities for Optimization.Neurology and therapy · 2026Review
- Cenobamate: An Appraisal Five Years On.Neurology and therapy · 2026Review
- Perspectives on the burden of drug-resistant epilepsy and treatment priorities: Findings from a multistakeholder survey.Epilepsia open · 2026Article
- Nonseizure symptoms and broader seizure impacts in patients with Dravet syndrome and Lennox-Gastaut syndrome in clinical practice settings: Results from a multinational survey.Epilepsia open · 2025Article
- Fenfluramine: an effective treatment for developmental epileptic encephalopathies beyond Dravet and Lennox-Gastaut Syndromes.Journal of neurology · 2025Article
- Refining management strategies for Lennox-Gastaut syndrome: Updated algorithms and practical approaches.Epilepsia open · 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
- FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic EncephalopathiesNeurology · 2024Review
- Neurostimulation for Generalized Epilepsy: Should Therapy be Syndrome-specific?Neurosurgery clinics of North America · 2024Review
- Caregivers' Perspectives on the Impact of Cannabidiol (CBD) Treatment for Dravet and Lennox-Gastaut Syndromes: A Multinational Qualitative Study.Journal of child neurology · 2023Article
- Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.Journal of intellectual disabilities : JOID · 2022Article
- Considering social determinants of health in the relationship between physical activity and exercise engagement and cognitive impairment among persons with epilepsy.Frontiers in rehabilitation sciences · 2022Article
- Comment on "Cost-Effectiveness of Cannabidiol Adjunct Therapy Versus Usual Care for the Treatment of Seizures in Lennox-Gastaut Syndrome".PharmacoEconomics · 2021Article
- Quantifying the burden of disease in patients with Lennox Gastaut syndrome.Epilepsy & behavior reports · 2021Article
Corrections and comments
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Lennox-Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives.
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