Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Abstract

People with epilepsy (PWE) have a two-to-threefold increased chance of premature death due to the condition (1). Epilepsy-related deaths are most commonly caused by epilepsyrelated accidents, suicide as a result of ill mental health, status epilepticus and sudden unexpected death in epilepsy (SUDEP) (2, 3). Uncertainty and fear surrounding the possibility of unexpected death causes PWE to desire to learn more about this aspect of living with epilepsy, particularly those with refractory epilepsy (4). SUDEP is the most common cause of death for PWE (5), yet PWE are not always told about this high risk (6). Although research within epilepsy-related death causes and prevention has increased, the qualitative insight of PWE, their family, friends, and healthcare providers (HCP) needs to be presented. This would enable further insight into what may aid adherence to management strategies, what is known about SUDEP, and the psychosocial impact the knowledge of SUDEP has upon the PWE and those around them who love and care for them. In presenting this literature, it is hoped that this could help prevent and promote interventions of unexpected death of people with epilepsy.. Addressing this need, we aimed to: a) present the experiences of PWE (e.g. children, teenagers, adults) discussing their thoughts and beliefs of SUDEP, what PWE have been told about SUDEP by their HCP, and their thoughts and feelings about interventions to prevent unexpected death; b) friends/family of PWE 's thoughts and feelings of SUDEP, and their thoughts and feelings on interventions to prevent SUDEP; and c), HCPs' discussion of the topic with PWE and interventions and/or prevention methods HCPs believe work best. 2. Material and methods We carried out a narrative synthesis to obtain a rigorous review of the qualitative research and grey literature within epilepsy-related death. This was through combining different types of evidence (e.g., qualitative research, mixed-methods research, grey literature) and examining relationships within and between studies and reports (7). 2.1 Search strategy: A comprehensive electronic literature search of all relevant peerreviewed qualitative studies and grey literature was conducted (see Figure 1). Databases

Recommendations for risk management and better living with epilepsy. Phenomenological study of the experience of patients, relatives, and bereaved families

“…Studies on neurologists [11,21] show that the majority rarely or never discuss the risk of SUDEP with their patients. They are reluctant to inform the patients because they fear their fear [27,28], especially since the sudden disclosure of the diagnosis without any additional information will have been experienced as a shock and a stressful event (as conveyed in our study).…”