To reveal or conceal? Adult patient perspectives on SUDEP disclosure

Patients and caregivers feel it is their right to be informed about SUDEP, irrespective of evoked fear. The vast majority of participants endorsed a requirement for HCPs to disclose related information. While some participants endorsed fear, most agreed that SUDEP awareness motivated them to better manage factors that trigger seizures. Patient education regarding SUDEP may play a key role in encouraging modifying lifestyle factors that lower seizure threshold and facilitate more aggressive interventions in patients with pharmacoresistant epilepsy.