“Daring to speak of SUDEP” - caregiver and neurologist perspectives on the risk for premature mortality in Dravet Syndrome

Caregivers want to be informed about the risk of premature mortality in DS in a physical meeting, even though it is 'scary'. When the neurologist fails to inform, information is found via other sources. Neurologists may prefer to give verbal information to facilitate adapting to the individual context, but complementary written information is important for caregivers. The multidisciplinary team is crucial for providing support for the caregivers to manage and live with the risk of premature mortality.