Best Practice Communication During the First Diagnosis Consultation with Caregivers of Young Children with Dravet Syndrome: An International Delphi Consensus
Abstract number :
1.145
Submission category :
15. Practice Resources
Year :
2024
Submission ID :
1266
Source :
www.aesnet.org
Presentation date :
12/7/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Katherine Nickels, MD, FAAN, FAES – Mayo Clinic
Delphine Breuillard, MSc – Hôpital Necker-Enfants malades, APHP
Andreas Brunklaus, MD – Royal Hospital for Children
Francesca Darra, MD – University of Verona
Silke Flege, MD – Dravet Syndrome e.V.
Andrea Giuffrida, MSN – Ospedale Pediatrico Bambino Gesù
Susanne Schubert-Bast, Prof. Dr. – Goethe-University Frankfurt
Claire Eldred, BS – Dravet Syndrome UK
Rocío Sánchez-Carpintero, MD, PhD – Clínica Universidad de Navarra
Rationale: Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy (DEE) commonly associated with drug-resistant, lifelong seizures and numerous comorbidities, including motor and intellectual impairment. The broad and evolving spectrum of DS symptoms pose significant challenges not only to its treatment but also to the communication of its diagnosis to parents and caregivers, who may experience a high physical and emotional burden at that moment. A committee of 9 international experts in DS management initiated a Delphi consensus process to develop practical recommendations for healthcare professionals (HCPs) to orderly and assertively communicate the DS diagnosis to caregivers.
Methods: Based on the literature and their personal experience, the committee formulated 34 statements which were independent- and anonymously voted on (from 1, totally inappropriate, to 9, totally appropriate) by expert child neurologists, neuropsychiatrists, nurses and patient advocacy group (PAG) representatives. The formulated statements were divided into 5 chapters: (i) communication during the first diagnosis consultation, (ii) information to deliver during that first consultation, (iii) points for reiteration at the end of the first 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.
Results: The statements were evaluated by 44 HCPs and PAGs in a first round of voting (November 2023); 29 statements obtained strong consensus, 3 good consensus and 2, no consensus. The committee reformulated 4 statements and resubmitted them for evaluation in February 2024: 3 obtained strong consensus and 1 remained without consensus (42/44 responses). Final recommendations for diagnosis communication, including when and how discussing genetic results, seizure types, their triggers and management, disease evolution or the risk of SUDEP will be presented during the congress.
Conclusions: It is hoped that these international best practice recommendations will help a better structured initial diagnosis consultation and will offer further support for parents/caregivers at the challenging moment of learning about DS.
Funding: Study supported by Biocodex.
Practice Resources