SUDEP: To discuss or not? Recommendations from bereaved relatives

PURPOSE: The overarching purpose of this descriptive and exploratory qualitative study was to understand the experiences of relatives of individuals whose deaths were identified as SUDEP and to explore their preferences regarding SUDEP counseling. METHODS: The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 27 bereaved relatives (parent, sibling, spouse or child), aged at least 18 years, of 21 persons who passed away because of SUDEP. In-depth one-to-one interviews were conducted. Directed content analysis was used to code, categorize, and synthesize the interview data. RESULTS: There was consensus among all participants that the risk of SUDEP should be discussed with patients by their healthcare providers. Relatives opted for information on SUDEP at the time of, or shortly following, the diagnosis of epilepsy. Neurologists were identified as the healthcare providers who should discuss SUDEP with patients during a face-to-face encounter, subsequently supplemented with written information. It was identified that, when discussing SUDEP, emphasis should be on the risk factors, possible preventive strategies, and the rarity of incidence. CONCLUSION: The results of this study indicated that bereaved relatives wanted neurologists to inform patients about the risk of SUDEP, with optimal timing and setting of SUDEP counseling determined on a case-by-case basis.