Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy



Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients’ health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information to PWE.


Baseline knowledge and behaviors among PWE and behavioral adjustments following the provision of SUDEP information were evaluated in a prospective, multicenter survey using the following validated scales: Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) for depression symptoms, the EuroQoL (EQ-5D) for health-related quality of life (HRQoL), a visual analog scale (VAS) for overall health, the revised Epilepsy Stigma Scale (rESS) for perceived stigma, and the Seizure Worry Scale for seizure-related worries. The prospective study collected data through semi-quantitative interviews before (baseline), immediately after (post), and 3 months after (3-month) the provision of SUDEP information.


In total, 236 participants (mean age: 39.3 years, range: 18–77 years, 51.7% women) were enrolled, and 205 (86.9%) completed long-term, 3-month follow-up. One patient died from SUDEP before follow-up. No worsening symptoms from baseline to 3-month were observed on any scale. At baseline, 27.5% of participants were aware of SUDEP. More than 85% of participants were satisfied with receiving SUDEP information. Three-quarters of participants were not concerned by the information, and more than 80% of participants recommended the provision of SUDEP information to all PWE. Although most patients reported no behavioral adjustments, 24.8% reported strong behavioral adjustments at 3-month.


The provision of SUDEP information has no adverse effects on overall health, HRQoL, depressive symptoms, stigma, or seizure worry among PWE, who appreciate receiving information. SUDEP information provision might improve compliance among PWE and reduce but not eliminate the increased mortality risk.