Lennox-Gastaut Syndrome (LGS): Development of conceptual models of health-related quality of life (HRQL) for caregivers and children
Open accessAbstract
LGS is a severe form of childhood epilepsy which is characterized by multiple seizures and cognitive impairment. Semi-structured interviews were conducted with 40 parents of children with LGS in the US, UK, and Italy. Parents were asked to report on their perceptions of the HRQL of their child and also to describe the impact on their own HRQL. Thematic analysis was conducted to develop themes relating to the impact on HRQL. The themes were organized into conceptual models of the impact of LGS on the HRQL of the parent and the child. The models demonstrate the complex relationships between the components of LGS and their impact on HRQL.
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Parents of children with LGS, the vast majority mothers, reported constant anxiety, difficulties in accessing childcare, restriction of social life and poor mental health.
“Parents of children with LGS, the vast majority mothers, reported constant anxiety, difficulties in accessing childcare, restriction of social life and poor mental health 229,230 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [229]
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- Authors
- Gallop, K., Wild, D., Verdian, L., Kerr, M., Jacoby, A., Baker, G., Nixon, A., & Cramer, J. A.
- Affiliations
- Eisai (United Kingdom) (GB)
- Cardiff University (GB)
- University of Liverpool (GB)
- Walton Centre (GB)
- Yale University (US)
- Corresponding author
- Gallop, Katy
- Venue
- Seizure
- Publisher
- Elsevier BV
- Published
- 2010-01
- Volume
- 19
- Issue
- 1
- Pages
- 23-30
- ISSN
- 1059-1311 (ISSN-L)
- OpenAlex
- W2162288300
- Cited by
- 65
- References
- 21
- Citations by year
- 2026: 6 · 2025: 6 · 2024: 12 · 2023: 4 · 2022: 1 · 2021: 7 · 2020: 4 · 2019: 1 · 2018: 5 · 2017: 2 · 2016: 3 · 2015: 3 · 2014: 3 · 2013: 1 · 2012: 1
- FWCI
- 1.44
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Seizure (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Eisai
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- Lennox-Gastaut syndrome, health-related quality of life, pediatric epilepsy, parental caregivers, caregiver burden, conceptual model, cognitive impairment, family impact
- MeSH terms
- Adolescent, Adult, Behavioral Symptoms, Child, Developmental Disabilities, Child, Preschool, Cognition Disorders, Cross-Cultural Comparison, Disability Evaluation, Emotions, Epilepsy, Female, United Kingdom, Health Status, Humans, Male, Motor Activity, Neuropsychological Tests, Parent-Child Relations, Parents, Perception, Psychiatric Status Rating Scales, Quality of Life, Severity of Illness Index, Socioeconomic Factors, United States, Young Adult
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