Sudden unexpected death in epilepsy (SUDEP): what do patients think?

Abstract

Objectives: Sudden unexpected death in epilepsy (SUDEP) is a major cause of mortality in epilepsy. Despite its devastating consequences, SUDEP appears to be poorly discussed with patients by health professionals. The risk of causing psychological distress to the patient is highlighted as a reason for not discussing SUDEP. However, no studies have assessed the adult patients' views on this important question. We conducted this cross-sectional study to evaluate the awareness and perspectives on SUDEP among adult patients with epilepsy.

Methods: One hundred five consecutive adult patients with epilepsy, referred to the Epilepsy Clinic of a tertiary hospital between October 2012 and November 2013, were surveyed to ascertain their views and understanding of SUDEP. The data were analyzed using logistic regression to explore the association between patients' awareness of SUDEP and characteristics such as age, gender, duration of epilepsy, level of education, and employment.

Results: Awareness of SUDEP among adult patients with epilepsy was poor (14.3%). However, the vast majority (89.5%) wished to be informed about SUDEP, and 59% requested detailed information. The treating neurologist was considered to be the most appropriate source of SUDEP information by 85.6% of patients. Multivariable analysis of the data showed no association between characteristics of patients (age, gender, duration of epilepsy, level of education, and employment) and their awareness of SUDEP or desire to get SUDEP-related information.

Conclusions: Our study suggests that the majority of adult patients wish to be informed about SUDEP. This is in contrast to the general reluctance of medical professionals to inform all patients routinely about this condition.

Keywords: Epilepsy; Mortality; Patients' perspectives; Sudden unexpected death in epilepsy.