The Pediatric Epilepsy Side Effects Questionnaire: Establishing clinically meaningful change

Abstract The present study extends the utility of the Pediatric Epilepsy Side Effects Questionnaire (PESQ) by determining distribution-based minimally clinically important difference (MCID) scores. Participants (N = 682) were youth (ages 2–25) with newly diagnosed and chronic epilepsy pooled from research and clinical data in the Comprehensive Epilepsy Center. Caregivers completed the PESQ. Demographic and medical data were extracted from medical chart reviews or via a questionnaire. The MCIDs, which are the standard errors of measurement for each scale, for the entire sample were as follows: Cognitive = 4.66, Motor = 4.67, Behavior = 8.05, General Neurological = 7.41, Weight = 9.58, and Total Side Effects = 3.25. Additionally, MCIDs for patients with new-onset (  12 months), and chronic epilepsy on polytherapy were calculated. Results from the present study extend the utility of the PESQ by providing clinicians and researchers an enhanced understanding about clinically meaningful changes in side effect profiles across the pediatric epilepsy spectrum. These data can inform clinical decision-making for clinicians and researchers.