Developing optimized physical activity interventions for drug-resistant epilepsy: Challenges and lessons learned from a remote exercise intervention pilot trial

People with epilepsy (PWE) stand to benefit significantly from increasing their physical activity, but promotion of physical activity is difficult in any population; a challenge compounded by the unique barriers encountered by PWE, especially those with drug-resistant epilepsy (DRE). This study explores the feasibility of a remotely delivered, 12-week aerobic exercise program based on social cognitive theory principles in adults with DRE. This line of research is nested within the Multiphase Optimization Strategy (MOST), a framework that emphasizes iterative early pilot work (preparation phase research), followed by iterative optimization phase research. Ten participants were recruited, and four out of ten completed the study, resulting in 3.8 % recruitment from those preliminarily eligible by chart review, and 40 % retention. While acceptability was high among those who completed the study, recruitment, retention, and uptake were low. Three key related lessons learned emerged: 1) low appeal of an exercise intervention in our population of DRE 2) barriers related to comorbid mental health struggles, and 3) fear of seizures. How to best approach physical activity promotion in PWE, particularly DRE, will require a somewhat novel approach involving iterative pilot work and optimization before large scale efficacy trials and implementation can be achieved.