Bridging the gap of risk communication and management using the SUDEP and Seizure Safety Checklist

Sudden unexpected death in epilepsy (SUDEP) is a tragic condition and, despite varied risk levels among the population with epilepsy, is the cause of significant premature mortality. In the last 20 years, though awareness of SUDEP has increased among epilepsy professionals, little has changed with regard to the death rates per se, in rates of informing people with epilepsy (PWE) of their person-centered SUDEP risks, or in the awareness levels of nonepilepsy clinicians, such as, primary care practitioners and hospital doctors. The challenges to make aware and inform PWE have been multifold, in particular, ‘when’, ‘what’, and ‘how’ to tell about SUDEP. Current guidance recognizes that to improve SUDEP rates, it is important to engage proactively with PWE. There is a need to bring shared responsibility between clinicians and PWE to help mitigate the risk of SUDEP. To enable this, a meaningful evidence-based person-centered conversation is essential. The SUDEP and Seizure Safety Checklist (“Checklist”) was created to facilitate this. This paper showcases the background, concept, development, implementation, feasibility and validity studies undertaken, challenges, barriers, and limitations of the eight-year Checklist project, which has moved from a single clinic to an international presence. It outlines the need to further reform SUDEP risk communication recognizing the differences between a basic risk message at time of diagnosis as advocated by current good practice guidance and the need for a more person-centered discussion on a regular basis for which the Checklist can be a key catalyst.