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DOI: 10.1055/a-2686-0818
Quality of Life of Children and Adolescents with Epilepsy Compared to Their Healthy Peers: A Cross-Sectional Study
Authors
Funding Information None.

Abstract
Objective
Epilepsy significantly impacts the health-related quality of life (HRQoL) of children and adolescents (CaA). This study aimed to assess HRQoL in pediatric epilepsy patients compared to their healthy peers, using both self- and proxy-reports, and to identify specific HRQoL domains affected by epilepsy.
Methods
A single-center, cross-sectional study was conducted in Munich between October 2021 and June 2023. HRQoL was assessed in 139 patients aged 3 to 17 years with medically diagnosed epilepsy using age-adapted, validated KINDL© questionnaires, completed by the patients and one caregiver. The questionnaire comprised six subscales: “Physical Well-being,” “Emotional Well-being,” “Self-Esteem,” “Family,” “Friends,” and “Everyday Functioning.” Control values from healthy CaA aged 7 to 17 were drawn from the BELLA and KiGGS studies. Welch tests and Wilcoxon signed-rank tests were used for statistical comparisons.
Results
Compared to their healthy peers, CaA with epilepsy reported significantly lower HRQoL overall, particularly in the subscales “Physical Well-being,” “Emotional Well-being,” and “Friends.” No significant differences were observed in the “Family” subscale. Interestingly, self-reports revealed a trend toward higher “Self-Esteem” scores among CaA with epilepsy, though this did not reach statistical significance. No significant differences emerged between self- and proxy-reported total HRQoL scores.
Significance
Epilepsy in CaA is associated with reduced HRQoL, especially in physical, emotional, and social domains. Stable family support can cushion some negative effects. In particular, the unexpectedly high results in the area of self-confidence should be the subject of future research.
Ethical Approval
The study protocols (#21-0887) were confirmed by the local ethical board of the Medical Faculty of the University of Munich.
Data Availability Statement
The data substantiating the results of this study are available on reasonable request from the corresponding author.
Note
This work has never been presented at a meeting.
Publication History
Received: 28 May 2025
Accepted: 18 August 2025
Accepted Manuscript online:
19 August 2025
Article published online:
04 September 2025
© 2025. Thieme. All rights reserved.
Georg Thieme Verlag KG
Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany
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References
- 1 Camfield CS, Camfield PR, Gordon K, Wirrell E, Dooley JM. Incidence of epilepsy in childhood and adolescence: a population-based study in Nova Scotia from 1977 to 1985. Epilepsia 1996; 37 (01) 19-23
- 2 Camfield P, Camfield C. Incidence, prevalence and aetiology of seizures and epilepsy in children. Epileptic Disord 2015; 17 (02) 117-123
- 3 Fisher RS, Acevedo C, Arzimanoglou A. et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia 2014; 55 (04) 475-482
- 4 Riley AW. Evidence that school-age children can self-report on their health. Ambul Pediatr 2004; 4 (4 Suppl): 371-376
- 5 Ferro MA. Risk factors for health-related quality of life in children with epilepsy: a meta-analysis. Epilepsia 2014; 55 (11) 1722-1731
- 6 Cianchetti C, Messina P, Pupillo E. et al; TASCA Study Group. The perceived burden of epilepsy: Impact on the quality of life of children and adolescents and their families. Seizure 2015; 24: 93-101
- 7 Speechley KN, Ferro MA, Camfield CS. et al. Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study. Neurology 2012; 79 (15) 1548-1555
- 8 Miller V, Palermo TM, Grewe SD. Quality of life in pediatric epilepsy: demographic and disease-related predictors and comparison with healthy controls. Epilepsy Behav 2003; 4 (01) 36-42
- 9 Erhart M, Ellert U, Kurth BM, Ravens-Sieberer U. Measuring adolescents' HRQoL via self reports and parent proxy reports: an evaluation of the psychometric properties of both versions of the KINDL-R instrument. Health Qual Life Outcomes 2009; 7: 77
- 10 Ravens-Sieberer U, Erhart M, Wille N, Bullinger M. BELLA Study Group. Health-related quality of life in children and adolescents in Germany: results of the BELLA study. Eur Child Adolesc Psychiatry 2008; 17 (Suppl. 01) 148-156
- 11 Ravens-Sieberer U, Ellert U, Erhart M. [Health-related quality of life of children and adolescents in Germany. Norm data from the German Health Interview and Examination Survey (KiGGS)]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2007; 50 (5-6): 810-818
- 12 Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998; 7 (05) 399-407
- 13 West RM. Best practice in statistics: Use the Welch t-test when testing the difference between two groups. Ann Clin Biochem 2021; 58 (04) 267-269
- 14 Ruxton GD. The unequal variance t-test is an underused alternative to Student's t-test and the Mann–Whitney U test. Behav Ecol 2006; 17 (04) 688-690
- 15 Kuramochi I, Iwayama T, Brandt C, Yoshimasu H, Bien CG, Hagemann A. Assessment of self-stigma in epilepsy: Validation of the German version Epilepsy Self-Stigma Scale (ESSS-G). Epilepsia Open 2023; 8 (03) 946-958
- 16 Reuner G, Kadish NE, Doering JH, Balke D, Schubert-Bast S. Attention and executive functions in the early course of pediatric epilepsy. Epilepsy Behav 2016; 60: 42-49
- 17 Schraegle WA, Titus JB. Executive function and health-related quality of life in pediatric epilepsy. Epilepsy Behav 2016; 62: 20-26
- 18 Dunn DW, Austin JK, Perkins SM. Prevalence of psychopathology in childhood epilepsy: categorical and dimensional measures. Dev Med Child Neurol 2009; 51 (05) 364-372
- 19 Netson KL, Ashford JM, Skinner T. et al. Executive dysfunction is associated with poorer health-related quality of life in pediatric brain tumor survivors. J Neurooncol 2016; 128 (02) 313-321
- 20 Hoge RD, Renzulli JS. Exploring the link between giftedness and self-concept. Rev Educ Res 1993; 63 (04) 449-465
- 21 Cahill PT, Ferro MA, Campbell WN, Ronen GM. Self-esteem mediates mental health outcomes in young people with epilepsy. Epilepsia 2021; 62 (09) 2072-2081
- 22 Leeman J, Crandell JL, Lee A, Bai J, Sandelowski M, Knafl K. Family functioning and the well-being of children with chronic conditions: a meta-analysis. Res Nurs Health 2016; 39 (04) 229-243
- 23 Khanna D, Khadka J, Mpundu-Kaambwa C, Lay K, Russo R, Ratcliffe J. Quality of Life in Kids: Key Evidence to Strengthen Decisions in Australia (QUOKKA) Project Team. Are we agreed? Self- versus proxy-reporting of paediatric health-related quality of life (HRQoL) using generic preference-based measures: a systematic review and meta-analysis. PharmacoEconomics 2022; 40 (11) 1043-1067
- 24 Ronen GM, Streiner DL, Rosenbaum P. Canadian Pediatric Epilepsy Network. Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures. Epilepsia 2003; 44 (04) 598-612
- 25 Sorg A-L, von Kries R, Borggraefe I. Cognitive disorders in childhood epilepsy: a comparative longitudinal study using administrative healthcare data. J Neurol 2022; 269 (07) 3789-3799
- 26 Ncube BL, Perry A, Weiss JA. The quality of life of children with severe developmental disabilities. J Intellect Disabil Res 2018; 62 (03) 237-244