SUDEP: What do adult patients want to know?

The purpose of this descriptive qualitative study was to understand the range of adult patients' views on whether and how to discuss the issue of SUDEP with patients with epilepsy and to clarify the optimal timing and formulation of this information.

The principles of fundamental qualitative description informed all design decisions. Twenty-three patients aged 18-65years participated in the study. Nineteen participants completed a single one-on-one telephone interview, whereas four participants shared their experiences in a focus group. Directed content analysis was used to code, categorize, and synthesize the interview data.

Of the 42 patients invited to participate, 23 participated in the study. There was consensus among all study participants that all individuals diagnosed with epilepsy should be informed about SUDEP. Many participants believed that the best time to be told about SUDEP was at diagnosis. The majority of participants suggested that the discussion about SUDEP should take place face to face, in a verbal discussion, followed by written information to take home. Several participants suggested that the information about SUDEP should not be shared separately but rather incorporated into the general information they received about epilepsy. Nearly all the participants felt that the information about SUDEP should come from the neurologist.

Participants of this study wanted neurologists to inform patients about the risk of SUDEP, with the optimal timing and setting of SUDEP counseling determined on a case-by-case basis.