The Treatment Journey in Epilepsy: Part 1: Sticking Points in Treatment Decision-Making (P1.081)

OBJECTIVE: To describe factors contributing to the duration of the treatment journey from the perspective of the patient with refractory focal epilepsy.BACKGROUND: Our published explanatory framework of treatment decision-making in people with drug refractory epilepsy demonstrates various factors contributing to a long treatment journey. This qualitative study is the next step in explaining patient-related contributors.METHODS: Personal semi-structured interviews were done in two groups of patients with focal uncontrolled seizures: those undergoing a pre-surgical evaluation (n=16) and those who had consented for epilepsy surgery (n=20). The mean age of participants was 36 years and the mean duration of refractory seizures was 16 years.RESULTS: Perceptions of disease severity emerged as an overarching influence shaping a multifaceted, and protracted treatment journey. Epilepsy was viewed as a hidden condition contained within the brain and often not visible to others or even the patient. Uncertainty about diagnosis, the process of drug trials and ignorance of treatment options led many patients to “ignore seizures”. Delays in accessing comprehensive care contributed to patient acceptance of uncontrolled seizures and contributed to the opinions of some participants that this is a condition to be “taken in stride” and “lived around”.CONCLUSIONS: Inadequate understanding of the severity of epilepsy is a major obstacle in advancing care. Strategies are needed for informing patients and their support network about a complex diagnosis. Early in the disease process, the goals of care need to be clearly stated and the role of the comprehensive epilepsy center explained. Treatment alternatives should be presented before patients learn to tolerate/accept life-limiting consequences of this serious condition. Disclosure: Dr. Pieters has nothing to disclose. Dr. Ranit has nothing to disclose. Dr. Dewar has nothing to disclose.