Delphi consensus on referral criteria for pediatric patients with suspected Dravet syndrome

Abstract

Objectives

This study aimed to establish referral criteria, based on the Hattori precedent, to assist in the easy identification and referral of pediatric patients with suspected Dravet syndrome (DS) at first-line care facilities to support early diagnosis and appropriate management.

Methods

DS referral criteria were developed by a Scientific Committee (SC) of 9 epilepsy specialists by consensus review. These criteria were evaluated for suitability by an Expert Panel (EP) comprising 10 frontline healthcare professionals not specialized in epilepsy using a conventional two-phase Delphi methodology. Results were evaluated using the Interpercentile Range Adjusted for Symmetry method.

Results

Four DS referral criteria were proposed by the SC, including: (1) history of prolonged febrile/non-febrile seizures before one year of age; (2) history of different types of non-febrile seizures before one year of age; (3) history of seizures sensitive to temperature changes before one year of age; and (4) neurodevelopmental disorders without previous signs or regression. Genetic criteria were excluded due to lack of availability of tests for frontline professionals. The EP rated all four criteria as appropriate for use by frontline professionals (A), with a high degree of consensus (median score 6–9) across four dimensions (“ease of identification”, “relevance”, “feasibility of referral if one criterion met”, and “feasibility of referral if > 1 criterion met”).

Conclusions

A set of DS referral criteria has been identified and validated for use by non-epilepsy-specialized professionals within the framework of current clinical practice. The adapted criteria could be effective and beneficial for incorporation into existing care protocols.