Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus.

ABSTRACT:

Objective

Dravet syndrome is a developmental and epileptic encephalopathy characterized by drug-resistance, lifelong seizures, and significant comorbidities including intellectual and motor impairment. Receiving a diagnosis of Dravet syndrome is challenging for parents/caregivers, and little research has focused on how the diagnosis should be given. A Delphi consensus process was undertaken to determine key aspects for healthcare professionals (HCPs) to consider when communicating a Dravet syndrome diagnosis to parents/caregivers.

Methods

Following a literature search and steering committee review, 34 statements relating to the first diagnosis consultation were independent- and anonymously voted on (from 1, totally inappropriate, to 9, totally appropriate) by an internationa

SUBMITTER: Brunklaus A 

PROVIDER: S-EPMC12014930 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature