ArticleEpilepsia open2025
Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus.
Article in Epilepsia open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Mental health impacts experienced by caregivers of people with Dravet syndrome: A systematic literature review.Epilepsia · 2026Pooled it
- From first seizure to specific antiseizure medication in Dravet syndrome: Quantifying delays in the DS'coverED study.Epilepsia open · 2026Article
- Optimizing polytherapy management for Dravet syndrome in the United States: A National Expert Consensus.Epilepsia open · 2026Article
- Practical consensus recommendations for polytherapy involving stiripentol in Dravet syndrome: A nominal group approach.Epilepsia open · 2026Article
- The Difficult Journey of a Child with Dravet Syndrome: Perspectives from a Parent and the Neuropaediatrician.Neurology and therapy · 2025Article
- Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus.Epilepsia open · 2025Article
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Authors and funding
10 authors.
Funding
Abstract
objectiveDravet 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.
methodsFollowing 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 international group of expert child neurologists, neuropsychiatrists, nurses, and patient advisory group (PAG) representatives. The statements were divided into five chapters: (i) communication during the first diagnosis consultation, (ii) information to be delivered during the first diagnosis consultation, (iii) points to be reiterated at the end of the first diagnosis consultation, (iv) information to be delivered at subsequent consultations, and (v) communication around genetic testing. Statements receiving ≥ 75% of the votes with a score of ≥7 and/or with a median score of ≥8 were considered consensual.
resultsThe statements were evaluated by 44 HCPs and PAG representatives in the first round of voting; 29 statements obtained strong consensus, 3 received good consensus, and 2 did not reach consensus. The committee reformulated and resubmitted 4 statements for evaluation (42/44 voters): 3 obtained strong consensus and 1 remained not consensual. The final consensual recommendations include guidance on consultation setting, key disease aspects to convey, how to discuss genetic testing results, disease evolution, and the risk of SUDEP, among other topics. SIGNIFICANCE: It is hoped that this international Delphi consensus will facilitate a better-structured initial diagnosis consultation and offer further support for parents/caregivers at this challenging time of learning about Dravet syndrome. PLAIN LANGUAGE SUMMARY: Diagnosis of Dravet syndrome, a rare and severe form of childhood-onset epilepsy, is often challenging to give to parents. This international study developed guidance and recommendations to help healthcare professionals better structure and personalize this disclosure. By following this advice, doctors can provide more tailored support to families, improving their understanding and management of the condition.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.