Health-Related Quality of Life in Pediatric Epilepsy
Summary
Health-related quality of life (HRQoL) in children and adolescents with epilepsy encompasses physical, psychological, social and educational dimensions of well-being. Beyond seizure frequency and severity, factors such as treatment side effects, cognitive and behavioural comorbidities, family functioning and societal stigma play a critical role in determining overall life quality. Comprehensive assessment of HRQoL relies increasingly on validated patient-reported outcome measures and their proxy-reported counterparts, recognising that young people’s perspectives and parental insights may differ. Multidisciplinary care models integrate seizure control with psychological support, educational accommodations and family counselling to address the broader impact of epilepsy. Global consensus efforts have underscored the need for standardised outcome sets to enable comparison across settings and to guide intervention trials. Recent innovations include digital applications for real-time monitoring of symptoms and well-being, and psychosocial interventions such as mindfulness-based programmes delivering measurable improvements in both child and parent HRQoL. Despite advances, disparities persist in access to appropriate measurement tools and support services, particularly in low-resource regions. Future priorities involve refining theoretical models of paediatric HRQoL, validating culturally adapted instruments and embedding HRQoL as a primary end point in clinical practice and research.
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Health-Related Quality of Life in Pediatric Epilepsy publication trend
The graph below shows the total number of articles in health-related quality of life in pediatric epilepsy across all publications each year (not limited to Nature Index journals).
Technical terms
Health-related quality of life (HRQoL): A multidimensional concept encompassing physical, mental, social and role functioning as affected by health status.
Patient-reported outcome measure (PROM): A questionnaire completed by patients (or proxies) to assess symptoms, functional status and quality of life directly from the patient’s perspective.
Core outcome set (COS): An agreed minimum collection of outcomes that should be measured and reported in all clinical studies for a specific condition.
Proxy report: Assessment of a patient’s health or quality of life provided by a caregiver or parent when self-report is not feasible.
Consensus methods: Structured approaches, such as the Delphi process, used to achieve agreement among experts and stakeholders on key topics or outcomes.
References
- Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants, Children, and Adolescents with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations. Epilepsia (2024).
- The Quality of Life of Children with Epilepsy and the Impact of the Disease on the Family Functioning. International Journal of Environmental Research and Public Health (2022).
- Assessment of quality of life in children with epilepsy in Oman. Journal of Patient-Reported Outcomes (2023).
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