Development and validation of the Pediatric Epilepsy Side Effects Questionnaire
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Abstract
Objective: To develop and validate a measure of antiepileptic drug (AED) side effects in children with a variety of seizure types, treatments, and therapy durations.
Methods: Content for an initial 44-item measure was developed using the previously published Hague Scale and expert opinion from recognized pediatric epileptologists (n = 12) and caregivers of children with epilepsy (n = 21). The measure was completed by caregivers during routine clinic visits. Demographic and medical data were collected through chart reviews. Factor analysis was conducted and internal consistency, test-retest reliability, and construct validity were assessed.
Results: Questionnaires were analyzed from 495 children with epilepsy (Mage = 10.1 years; range 2–21 years; 42% female; 14% African American; 32% new onset vs 68% chronic epilepsy). The final questionnaire, the Pediatric Epilepsy Side Effects Questionnaire (PESQ), is a 19-item measure with 5 subscales (i.e., cognitive, motor, behavioral, general neurological, and weight) that accounts for 99% of the variance. Internal consistency coefficients and test-retest reliabilities ranged from 0.72 to 0.93 and 0.74 to 0.97, respectively. Construct validity was demonstrated by increasing side effects as the number of drugs increased. Participants on valproic acid had significantly higher scores on the Weight Scale compared to those on carbamazepine.
Conclusions: The PESQ is a reliable and valid measure of AED side effects in children across the epilepsy spectrum that can be used in both clinical and research settings.
GLOSSARY
- AED =
- antiepileptic drug;
- CBZ =
- carbamazepine;
- ICC =
- intraclass correlation coefficients;
- IRB =
- Institutional Review Board;
- MCID =
- minimal clinically important difference;
- PESQ =
- Pediatric Epilepsy Side Effects Questionnaire;
- VPA =
- valproate
Footnotes
Study funding: Supported by NIH K23HD057333 (A.C.M.) and U01NS045911 (T.A.G.).
Editorial, page 1194
Supplemental data at www.neurology.org
- Received November 3, 2011.
- Accepted March 21, 2012.
- Copyright © 2012 by AAN Enterprises, Inc.
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