Adherence barriers in pediatric epilepsy: From toddlers to young adults

The objectives of this study were to examine the continuity of adherence barriers across stages of development in pediatric epilepsy and to assess the differential influence of barriers on several important clinical outcomes from early childhood to young adulthood, including adherence, seizures, and health-related quality of life (HRQOL). A developmentally representative sample of youth 2–25years with epilepsy was obtained by combining data from five different studies. A total of 269 caregivers and 77 adolescents and young adults were included in this investigation. Participants completed measures of adherence barriers and HRQOL. An electronic monitoring system was used to assess adherence to the primary antiepileptic drug over 30days. The prevalence of individual barriers across development and their relative importance as predictors of clinical outcomes were examined. Adherence barriers are characterized by both continuity and discontinuity from early childhood to early adulthood. Barriers such as disliking the taste of medication, parent forgetfulness, and refusal to take medications were significantly more salient during certain developmental periods. No significant differences across age groups were found for other barriers, including difficulty getting to the pharmacy and embarrassment. Certain adherence barriers, such as running out of medications, were more important to particular clinical outcomes despite being low prevalence. Adherence barriers differentially predicted adherence, seizure control, and HRQOL based on developmental stage. Routine assessment of adherence barriers is imperative from toddlerhood to young adulthood given that the prevalence of barriers and their relative influence on important health outcomes vary by developmental stage. Adherence intervention efforts should be targeted, developmentally tailored, and focused on those barriers that are most predictive of poor outcomes for a given developmental period. •The prevalence of adherence barriers changes across stages of development.•Certain barriers to adherence are more important to particular clinical outcomes.•The importance of barriers varies by age and warrants targeted intervention.•Routine assessment of adherence barriers is important throughout development.