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Delphi consensus on referral criteria for pediatric patients with suspected Dravet syndrome
Angel Aledo-Serrano1, Susana Boronat2, Juan José García-Peñas3
1Epilepsy Unit, Clinical Neuroscience Institute, Vithas Madrid University Hospitals, Spain.
Insights
New referral criteria help identify children with suspected Dravet syndrome (DS) in primary care. These validated guidelines support early diagnosis and management of this rare epilepsy disorder.
Area of Science:
- Pediatric Neurology
- Epilepsy Research
- Clinical Diagnostics
Background:
- Dravet syndrome (DS) is a rare, severe form of epilepsy in infants.
- Early diagnosis and management are crucial for improving outcomes.
- Current referral processes may delay identification in primary care settings.
Purpose of the Study:
- To establish evidence-based referral criteria for suspected Dravet syndrome (DS).
- To facilitate early identification and referral of pediatric patients from first-line care facilities.
- To support timely diagnosis and appropriate management of DS.
Main Methods:
- Developed referral criteria through consensus by an expert Scientific Committee (SC).
- Evaluated criteria suitability with frontline healthcare professionals (Expert Panel, EP) using a two-phase Delphi methodology.
- Assessed results using the Interpercentile Range Adjusted for Symmetry method.
Main Results:
- Four key referral criteria were proposed: prolonged seizures, diverse seizure types, temperature-sensitive seizures, and neurodevelopmental disorders before age one.
- Genetic testing criteria were excluded due to limited frontline availability.
- The EP unanimously rated all four criteria as appropriate, relevant, and feasible for frontline use with high consensus.
Conclusions:
- A validated set of Dravet syndrome referral criteria for non-epilepsy specialists has been identified.
- These criteria are designed for integration into current clinical practice and care protocols.
- The adapted criteria are expected to enhance early detection and management of Dravet syndrome.
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.
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