Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

Study aims were to describe the development and validation of a Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ) for caregivers of children 2-14 years. It was expected that PEMSQ scales would have 1) factors with high internal consistency (e.g., Cronbach's alpha > 0.70) and 2) moderate associations with adherence and seizures. Participants included caregivers of 119 children with epilepsy (Mage = 7.2 yrs, 36% female, 72% Caucasian) who completed the PEMSQ, demographics questionnaire, and AED adherence was assessed (e.g., electronic monitors, self-report). Factor analysis was conducted and internal consistency and construct validity were assessed. The final PEMSQ is 27 items with four scales (Epilepsy and Treatment Knowledge and Expectations, Adherence to Medications and Clinic Appointments, Barriers to Medication Adherence, and Beliefs about Medication Efficacy) accounting for 88% variance. Cronbach's alphas ranged from 0.68-0.85. Significant associations were found between PEMSQ scales, adherence, and seizures. The PEMSQ represents the first self-management measure validated for caregivers of children with epilepsy, with clinical and research utility.