Demystifying a family-based epilepsy adherence problem-solving intervention: Exploring adherence barriers and solutions.

Abstract

Barriers to medication adherence are common in pediatric epilepsy and associated with nonadherence, suboptimal seizure outcomes, and quality of life. A manualized, family-tailored education and problem-solving adherence intervention to address adherence barriers was tested in a randomized controlled trial in young children (2-12 years) with epilepsy. Study aims were to identify the adherence barriers and solutions chosen by families during intervention. Participants with demonstrated non-adherence were randomized to either education attention control or treatment. In this exploratory, secondary analysis, treatment group data were examined, including adherence barriers and solutions discussed during face-to-face problem-solving sessions and telephone follow-ups. Treatment data were independently coded utilizing codebook thematic analysis. Twenty-seven children were randomized to treatment (M=7.5±2.9; 59.1% female). Across sessions, coding revealed 10 adherence barriers: Overall Forgetting (38-57%), Routine Change Routine (14-24%), Competing Activities (5-19%), Opposition (0-9%), Transition of Responsibility (0-5%), Running Out of Medication (0-10%), Forgetting During Travel (0-10%), Medication Not a Priority (0-5%), Medication Taste (0-5%), and Pill Swallowing (0-5%). Eight solution types were chosen and implemented by families: Environmental Cuing (29-50%), Multi-Pronged solutions (0-24%), Positive Reinforcement (14-23%), Back-up Doses (0-14%), Refill Tracking (0-10%), Caregiver Modeling of Adherence Behavior (0-5%), Pill Swallowing Intervention (0-5%), and Other (0-5%). Results highlight key adherence barriers identified by families of children with epilepsy and solutions implemented to address them. These data provide guidance to healthcare teams on how to successfully address adherence barriers in clinical settings.Clinical trials #NCT01851057.