Validation of the Peds QL Epilepsy Module: A pediatric epilepsy‐specific health‐related quality of life measure
Open accessAbstract
Summary: Objective: To validate a brief and reliable epilepsy‐specific, health‐related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics. Methods: This national validation study was conducted across five epilepsy centers in the United States. Youth 5–18 years and caregivers of youth 2–18 years diagnosed with epilepsy completed the Peds QL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy‐specific HRQOL instrument. Demographic and medical data were collected through chart reviews. Factor analysis was conducted, and internal consistency (Cronbach's alphas), test–retest reliability, and construct validity were assessed. Results: Questionnaires were analyzed from 430 children with epilepsy (M age = 9.9 years; range 2–18 years; 46% female; 62% white: non‐Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final Peds QL Epilepsy Module is a 29‐item measure with five subscales (i.e., Impact, Cognitive, Sleep, Executive Functioning, and Mood/Behavior) with parallel child and caregiver reports. Internal consistency coefficients ranged from 0.70–0.94. Construct validity and convergence was demonstrated in several ways, including strong relationships with seizure outcomes, antiepileptic drug (AED) side effects, and well‐established measures of executive, cognitive, and emotional/behavioral functioning. Significance: The Peds QL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.
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Epilepsy-specific HRQoL measures are more salient to specific aspects of epilepsy and its treatments and thus constitute a particularly sensitive and responsive patient-reported outcome for people with epilepsy.
“Epilepsy-specific HRQoL measures are more salient to specific aspects of epilepsy and its treatments and thus constitute a particularly sensitive and responsive patient-reported outcome for PWE. 9,10”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [10]
The Abstract (page not provided) describes HRQoL as a patient-reported outcome and says an epilepsy-specific measure can assess the impact of epilepsy and its treatments on children’s daily functioning. The Discussion (page not provided) reports that the PedsQL Epilepsy Module distinguishes clinically meaningful groups. The paper validates a pediatric measure, however; it does not establish that epilepsy-specific measures generally are particularly responsive to change for all people with epilepsy. (LLM, conf=0.86)
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- Authors
- Modi, A. C., Junger, K. F., Mara, C. A., Kellermann, T., Barrett, L., Wagner, J., Mucci, G. A., Bailey, L., Almane, D., Guilfoyle, S. M., Urso, L., Hater, B., Hustzi, H., Smith, G., Herrmann, B., Perry, M. S., Zupanc, M., & Varni, J. W.
- Affiliations
- Cincinnati Children's Hospital Medical Center (US)
- Medical University of South Carolina (US)
- Children's Hospital of Orange County (US)
- Cook Children's Health Care System (US)
- University of Wisconsin–Madison (US)
- Texas A&M University (US)
- Corresponding author
- Modi, Avani C.
- ORCID
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 2017-09-13
- Volume
- 58
- Issue
- 11
- Pages
- 1920-1930
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W2755028539
- Cited by
- 71
- References
- 41
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 5 · 2023: 11 · 2022: 7 · 2021: 5 · 2020: 10 · 2019: 5 · 2018: 8 · 2017: 2
- FWCI
- 5.61
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Cincinnati Children's Hospital Medical Center
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Social Sciences › Education › Health Education and Validation
- Keywords
- pediatric epilepsy, health-related quality of life, children and adolescents, caregivers, antiepileptic drug adverse effects, executive function, sleep, cognitive function, mood and behavior, seizure outcome
- MeSH terms
- Adolescent, Child, Child, Preschool, Epilepsy, Female, Humans, Male, Pediatrics, Quality of Life, Surveys and Questionnaires, Reproducibility of Results
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