To reveal or conceal? Adult patient perspectives on SUDEP disclosure.

Objective: The study aimed to evaluate adult patient or caregiver feelings and viewpoints about sudden unexpected death in epilepsy (SUDEP) awareness.

Background: The decision to discuss SUDEP with patients and families has created much debate. Many healthcare providers (HCPs) are hesitant to discuss SUDEP because of the perception of evoking unnecessary fear in patients while others argue that informing patients about SUDEP may enhance patient compliance, improve seizure control, and aid in saving lives. This study quantifies patient viewpoints regarding their right to information, requirements of disclosure, and initial responses of fear and patient motivation toward behavioral change.

Design/methods: This was a prospective random sample survey of adult patients with epilepsy or their caregivers. Every third eligible adult patient with epilepsy or caregiver was given a one-page SUDEP information sheet promoted by the Epilepsy Foundation of America. Participants were then asked if they were interested in completing an eight-item questionnaire assessing their perception of the information.

Results: Ninety-four of ninety-six subjects completed the survey (98%). One hundred percent (n = 94) of responders felt they had a right to be informed about SUDEP, and 95% felt that their HCP should be required to inform them. Respondents also indicated that SUDEP awareness motivated them for better medication adherence (89%) and management of lifestyle factors that lower seizure threshold (88%). Thirty percent endorsed increased fear. However, 100% of those patients or caregivers who endorsed fear still felt it was their right to be informed. Patients who endorsed fear were also more likely to be interested in nonpharmacologic treatment options as a result of SUDEP disclosure.

Conclusions: 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.