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Published on: September 20, 2024
[Quality of life in children with epilepsy: a review]
C Soria1, C Bulteau, S El Sabbagh
1CNRS UMR 8189, laboratoire de psychologie et de neurosciences cognitives, institut de psychologie, université Paris Descartes, Boulogne-Billancourt, France.
Insights
Assessing health-related quality of life (HRQOL) in children with epilepsy is complex, involving child and family factors. This review examines HRQOL assessment methods, highlighting a French study
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Psychometrics
Context:
- Epilepsy significantly impacts children's lives, affecting behavior, cognition, and social interactions.
- Assessing health-related quality of life (HRQOL) in pediatric epilepsy is crucial but challenging due to its multidimensional nature.
- Existing HRQOL measures often rely on parental reports, with growing interest in child-centered perspectives.
Purpose:
- To review existing methodologies for assessing HRQOL in children with epilepsy.
- To explore the evolution of HRQOL assessment tools, including those incorporating the child's viewpoint.
- To present preliminary findings from a large-scale French study on pediatric epilepsy HRQOL.
Summary:
- Health-related quality of life (HRQOL) in pediatric epilepsy encompasses general well-being and epilepsy-specific concerns.
- Current assessment predominantly uses parental reports, but child-reported outcomes are increasingly important.
- HRQOL data informs clinical trials, treatment evaluations (especially surgical), and comprehensive patient care.
Impact:
- Provides a comprehensive overview of HRQOL assessment tools for pediatric epilepsy.
- Highlights the need for diverse perspectives (child, parent, clinician) in HRQOL evaluation.
- Contributes preliminary data from a French cohort, addressing a gap in large-scale studies.
Abstract:
Health-related quality of life (HRQOL) is a multidimensional construct, without general agreement on the number of domains and the content of each domain. In children with epilepsy, the HRQOL evaluation includes both nonspecific aspects, such as behavioral, psychological and cognitive difficulties and the impact of a chronic pediatric illness on the child and its family and specific aspects, such as the perception of the severity of the seizures and of the undesirable effects of the antiepileptic treatments, as well as the social impact of a negative attitude toward epilepsy. The present article presents a review of the methods proposed for the assessment of HRQOL in children with epilepsy. Most methods rely on parental reports; however, there is an increasing effort to develop tools taking the child's point of view into account. HRQOL tools have often been used in clinical trials and, especially, to evaluate the surgical treatments of epilepsy. For the clinician, HRQOL tools may be a preliminary approach to the patient's problems to be interpreted in relation to the patient's medical, psychological, cognitive, social and familial context. In France, few large-scale studies on HRQOL in children with epilepsy have been conducted. We present the preliminary results of a French study based on parental reports.
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