Medication Barriers in Pediatric Patients With Epilepsy

To identify the most common medication adherence barriers among pediatric patients with epilepsy, standardized screening was implemented in a child neurology division using the Barriers to Adherence Tool.

The Barriers to Adherence Tool was implemented as a standardized previsit questionnaire for follow-up encounters for seizures/epilepsy. Responses from July 2021 to March 2025 were analyzed.

The questionnaire was completed for 12,466 of 16,808 (74%) follow-up encounters for 5251 patients. At least one barrier was reported at 4351 (35%) encounters with completed questionnaires. The most common barriers included side effects (1612 barriers endorsed; 25%), does not control seizures (1000; 16%), trouble remembering medication (792; 12%), dislike medication taste (684; 11%), other (592; 9%), run out of medication (363; 6%), and too many medications/doses (320; 5%). Barriers were more often reported among patients who self-reported as Black/African American, experienced frequent seizures, or took more than one antiseizure medication. Conversely, barriers were reported less often among patients who self-reported as White, were seizure free or experienced infrequent seizures, or took one antiseizure medication. Among the 1166 patients who completed the questionnaire multiple times and endorsed a barrier at the first encounter, reported barriers were fewer at the last encounter for 770 patients (66%), unchanged for 277 patients (24%), and increased for 119 patients (10%).

Screening for medication barriers was feasible for a large cohort of patients in a sustainable and repeatable manner, and barriers were common. Future improvement initiatives may focus on improving common barriers.