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Behavioral problems, cognitive difficulties and quality of life in children with epilepsy: an analysis of parental
Carmen Soria1, Sylvie Escolano, Sandra El Sabbagh
1a Université Paris Descartes, Institut de Psychologie, Laboratoire de Psychologie et de Neuropyschologie Cognitives - CNRS FRE 3292 , Boulogne-Billancourt , France.
Insights
Proxy reports assess Quality of Life (QOL) and behavior in children with epilepsy. New tools are validated for all children, showing epilepsy type, age, and school setting impact QOL domains.
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Epilepsy Management
Background:
- Assessing Quality of Life (QOL) and behavior in children with epilepsy, especially those with cognitive impairments or young age, relies on proxy reports.
- Existing QOL tools may not be universally applicable across diverse epilepsy types and comorbidities in pediatric populations.
Purpose of the Study:
- To propose and validate proxy Quality of Life (QOL) tools suitable for all children with epilepsy, regardless of cognitive status.
- To investigate the influence of epilepsy characteristics (syndrome, age of onset) and child-specific factors (age, school setting) on QOL.
Main Methods:
- Adaptation of existing QOL scales and development of a new parental questionnaire for proxy assessment.
- Inclusion of 219 children with varied epilepsy types, with and without cognitive impairment.
- Analysis of QOL domains including global QOL, illness impact, emotional well-being, behavior, sociability, and parental QOL.
Main Results:
- School situation, epilepsy syndrome, and child's age significantly impacted various QOL domains.
- The developed proxy QOL tools demonstrated applicability across different pediatric epilepsy populations.
- Epilepsy syndromes and associated factors were found to critically influence parental concerns and QOL.
Conclusions:
- The proposed proxy QOL tools are effective for assessing children with epilepsy in clinical and research settings, irrespective of comorbidities.
- Understanding the interplay between epilepsy characteristics, child's situation, and QOL is crucial for comprehensive pediatric epilepsy care.
Abstract:
In cognitively impaired or young children with epilepsy, only proxy-report can be used for the assessment of Quality of Life (QOL) and behavior. The present study aims to propose proxy QOL tools applicable in all children with epilepsy and to examine the impact of epilepsy characteristics (e.g., age of onset of epilepsy, epilepsy syndrome) and child's age and situation (in mainstream school or in special institution). We studied 219 children with various types of epilepsy with and without cognitive impairment. The study adapted published QOL scales and used a new parental QOL questionnaire. Selected items concerned 6 "domains" of QOL: global QOL, illness impact, depression/anxiety, hyperactivity/disrupting behavior, sociability, and parental QOL. School situation, epilepsy syndrome, and age were significantly and differentially related to the QOL domains. The proposed QOL tools are applicable to all children with epilepsy independently of comorbid conditions and can be used in a clinical context and for research studies of QOL in children with epilepsy. Epilepsy syndromes in children and their associated factors have a crucial impact on parental concerns and QOL.
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