Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure.
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 PedsQL 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 (Mage = 9.9 years; range 2-18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final PedsQL 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 PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.
['Modi|Avani C|AC|', 'Junger|Katherine F|KF|', 'Mara|Constance A|CA|', 'Kellermann|Tanja|T|', 'Barrett|Lauren|L|', 'Wagner|Janelle|J|', 'Mucci|Grace A|GA|', 'Bailey|Laurie|L|', 'Almane|Dace|D|', 'Guilfoyle|Shanna M|SM|', 'Urso|Lauryn|L|', 'Hater|Brooke|B|', 'Hustzi|Heather|H|', 'Smith|Gigi|G|', 'Herrmann|Bruce|B|', 'Perry|M Scott|MS|', 'Zupanc|Mary|M|', 'Varni|James W|JW|']
D000293:Adolescent D002648:Child D002675:Child, Preschool D004827:Epilepsy D005260:Female D006801:Humans D008297:Male D010372:Pediatrics D011788:Quality of Life D015203:Reproducibility of Results D011795:Surveys and Questionnaires
Measurement Reliability Children Seizure Adolescents Disease-specific Parent-proxy Patient-reported outcome