VJVirtual | Best practices for communicating Dravet syndrome information to families

Katherine Nickels, MD, Mayo Clinic, Rochester, MN, discusses the best practices for communicating Dravet syndrome information to families based on a Delphi consensus. Dr Nickels advocates for an outpatient setting, where a healthcare professional knowledgeable about Dravet syndrome provides the initial consultation, followed by a follow-up appointment to allow families to process the information and ask questions. This approach includes discussing sudden unexpected death in epilepsy (SUDEP) risk, seizure safety, medication management, and genetic testing, while reiterating the importance of working with the child’s primary care team and providing families with reliable sources of information. This interview was recorded via an online conference call with The Video Journal of Neurology (VJNeurology).

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