Quality of life in children with epilepsy: Effect of socio demographic factors and parental awareness of seizure action plan in eastern India

Abstract

Background: Epilepsy is a chronic neurological disorder that disrupts daily life and negatively impacts quality of life
(QOL). While most medical approaches focus on seizure control, there is limited attention to the QOL of children with
epilepsy (CWE) in eastern India. This study aimed to assess QOL among CWE and examine the influence of socio
demographic factors, seizure characteristics, and parental awareness of a seizure action plan (SAP).
Methodology: This cross-sectional study was conducted in the Department of Paediatrics at a tertiary care teaching
hospital in eastern India from December 2020 to May 2022. Eighty children aged 5-15 years, all diagnosed with epilepsy
and on antiepileptic medication for at least six months, participated. Approval was obtained from the Institutional Ethics
Committee of the hospital concerned. The participants were interviewed using a structured pre-tested schedule. The
QOL of the participants was evaluated using the Quality of Life in Childhood Epilepsy (QOLCE-55) questionnaire.
Parental awareness of SAP was assessed based on their knowledge of essential seizure management actions. Kruskal
Wallis test was used to identify factors associated with QOL.
Results: The mean age in the study population was 9.37 ± 3.57 years, with 56.45% males. The mean QOL scores in
cognitive, emotional, social, and physical domains were 59.41, 55.11, 56.40, and 65.11, respectively. QOL steadily
declined with age, with emotional and social domains more impacted on older children. Maternal illiteracy, low
socioeconomic status, and earlier onset of epilepsy were significantly associated with poorer QOL (p<0.001). Only
21.25% of parents had complete awareness of SAP, and the children of these parents had relatively better QOL scores.
Conclusion: QOL was better in CWE who were younger, had late-onset epilepsy, belonged to the upper socioeconomic
class, and whose mothers were educated. Interventions enhancing parental awareness about SAP may lead to
improvement in the QOL of CWE.