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Quality of Life of Developmentally Normal Children With Epilepsy and Their Siblings
Abhishek Navik1, Anju Aggarwal1, Aaradhana Singh1
1Pediatrics, University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, IND.
Insights
Pediatric epilepsy negatively impacts the quality of life (QOL) for affected children. However, their healthy siblings
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Child Psychology
Background:
- Quality of life (QOL) is a critical aspect of managing chronic conditions like epilepsy.
- Limited research exists on the QOL impact of pediatric epilepsy on siblings.
- This study addresses the QOL of children with epilepsy and their unaffected siblings.
Purpose of the Study:
- To assess the QOL in developmentally normal children with epilepsy and their siblings.
- To examine the association between QOL scores and clinicodemographic factors.
- To understand the broader family impact of childhood epilepsy.
Main Methods:
- Utilized epilepsy-specific questionnaires (QOLCE-55, Peds QL EM) for children with epilepsy (ages 4-12).
- Employed the Peds QL Inventory for assessing sibling QOL.
- Data collected from parents at a tertiary care hospital in New Delhi, India.
Main Results:
- Children with epilepsy showed compromised QOL scores across various domains.
- Frequent breakthrough seizures significantly impacted overall QOL in affected children.
- Sibling QOL scores remained unaffected, indicating no significant distress.
Conclusions:
- Childhood epilepsy adversely affects the QOL of affected children.
- The QOL of siblings of children with epilepsy is not significantly impacted.
- Epilepsy management should consider the holistic QOL of the affected child.
Background:
Quality of life (QOL) is a fundamental and multidimensional concept that should be considered with health problems, specifically chronic diseases, such as epilepsy. There have been limited studies on how pediatric epilepsy impacts the QOL of siblings of affected individuals. Hence, we studied the impact of epilepsy on the QOL of affected children and their siblings.
Objective:
This study aimed to assess the QOL of developmentally normal children with epilepsy and their siblings and the association of QOL scores with the clinicodemographic profile.
Methods:
This study was conducted at the University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, India, a tertiary care hospital. The QOL of children (4-12 years) with epilepsy was assessed using epilepsy-specific questionnaires, i.e., Quality of Life in Childhood Epilepsy Questionnaire-55 (QOLCE-55), which covers the cognitive, emotional, social, and physical domains, and Pediatric Quality of Life Epilepsy Module (Peds QL EM), which covers the impact, cognitive, sleep, executive, and mood/ behavior domains. QOL in siblings was assessed using the Peds QL Inventory, which covers the following domains: physical, emotional, social, and school. The principal investigator administered these questionnaires to parents in Hindi/ English. Scoring was done as per standard instructions of the questionnaire. Clinical and demographic data were recorded in a pro forma.
Result:
The median QOLCE-55 score was 81.12, with a range of 74.65-86.34, and the median Peds QL EM score was 89.31, with a range of 75.58-94.48. Overall, Cronbach's alpha of QOLCE-55 and Peds QL EM was >0.8. Breakthrough seizures (≥10) affected the overall QOL (p=0.001) and all domains of QOLCE-55 (except emotional function (p=0.44)) and Peds QL EM (except sleep/fatigue domain (p=0.59)). Age, sex, parental education, socioeconomic status, and type of epilepsy did not affect the overall QOL (p>0.05). The QOL of siblings was not affected as per the Peds QL Inventory score (median score 100) and self-made questionnaire.
Conclusion:
Our results suggest that the QOL of children with epilepsy was compromised, whereas the QOL of their siblings was not affected.
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