Communication regarding sudden unexpected death in epilepsy to people with epilepsy and their caregivers: A scoping review from the ILAE Sudden Unexpected Death in Epilepsy Task Force.

Discussing sudden unexpected death in epilepsy (SUDEP) is difficult and sensitive for health care providers (HCPs), people with epilepsy (PwE), and caregivers. This scoping review examines the literature on SUDEP communication, focusing on need, timing, content, methods, facilitators, barriers, and outcomes. We performed a thematic analysis to identify themes that summarized the perceptions of the epilepsy community regarding key elements of SUDEP communication. We identified 66 articles that met inclusion criteria. These studies included more than 5300 HCPs and 40 000 PwE and caregivers. Caregivers and PwE felt that all PwE should receive SUDEP information. However, the majority of HCPs did not discuss SUDEP. The preferred source of information was an epilepsy specialist, but PwE also valued other HCPs with whom they have a trusted relationship. There was general agreement SUDEP should be discussed at diagnosis, but limited HCP time and training were barriers. Caregivers and PwE overwhelmingly wanted information about SUDEP. Greater education and training about SUDEP for HCP may facilitate communication. Fear of causing distress was the primary barrier to SUDEP communication. However, these concerns, although valid, were often exaggerated. Even in studies that found negative emotional responses to learning about SUDEP, participants regularly reported that the benefits of knowing outweighed the short-term consequences.