Abstracts

Rationale: Self-management and interventions to improve self-management have been studied extensively in the adult epilepsy literature (DiIorio and colleagues); however, few studies have examined this construct in pediatric epilepsy. The aims of the present study were to describe the development and validation of a Pediatric Epilepsy Self-Management Questionnaire for parents of children 2-14 years of age. The primary objective was to assess the reliability and validity of the Pediatric Epilepsy Self-Management Questionnaire (PESQ). Specifically, it was expected that PESQ scales would have 1) internally consistent factors (e.g., Cronbach’s alpha > 0.70) and 2) moderate associations with both an objective and self-reported adherence measure (construct validity) and seizure occurrence. Methods: Participants included children with epilepsy and their caregivers. Caregivers completed the PESQ. Item content for the original 40-item measure was based on expert advice and the extant pediatric literature regarding disease management. Adherence to the antiepileptic treatment regimen was measured in two ways: objective electronic monitors (MEMS TrackCaps) or self-report (1-item ad-hoc question). Demographic and medical data were also obtained, including seizure type and presence/absence of seizures. Results: Participants included 119 children with epilepsy and their caregivers. The cohort demographics were: 7.2 years (mean), 36% female, 72% Caucasian. Initial psychometric evaluation of the PESQ was completed by conducting a factor analysis and determining internal consistency coefficients and construct validity. The final PESQ is a 27-item measure with four scales (i.e., Epilepsy and Treatment Knowledge and Expectations, Adherence to Medications and Clinic Appointments, Barriers to Adherence, and Beliefs about Medication Efficacy) that account for 88% of the variance. The measure also includes a Total Epilepsy Self-Management score. Internal consistency coefficients range from 0.68 to 0.85. Significant associations were found between several scales on the Pediatric Epilepsy Self-Management Questionnaire and both objective and self-reported adherence (rs = 0.22-0.35, p < .05), suggesting construct validity. Conclusions: The Pediatric Epilepsy Self-Management Questionnaire represents the first self-management measure developed and validated specifically for caregivers of children with epilepsy. The PESQ should have clinical and research utility in a variety of settings including understanding facilitators and barriers to self-management, as well as education and improvements around communication between children with epilepsy, their caregivers, and the healthcare team. A valid and reliable measure of pediatric self-management is a necessary first step to identify clinical targets for intervention. Funded by the National Institutes of Health - K23 Grant (K23HD057333)