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Introducing the D-DAND scale: Development of a comprehensive caregiver-administered tool for Dravet syndrome
Bernardo Dalla Bernardina1, Francesca Offredi1,2, Alessio Toraldo3,4
1Research Center for Pediatric Epilepsies, Azienda Ospedaliera Universitaria Integrata of Verona, Verona, Italy.
Objective:
The Dravet Disease-Associated Neuropsychiatric Disorders (D-DAND) scale is a new caregiver-administered interview designed to assess the wide range of developmental and behavioral comorbidities in Dravet syndrome (DS) beyond seizures. D-DAND's preliminary psychometric properties in a large patient sample are reported.
Methods:
D-DAND was developed by a panel of experts and later standardized with caregivers of 123 individuals with DS (age = 3-41 years); a subsample of 43 caregivers were interviewed twice (~2 weeks apart) to evaluate test-retest reliability; another subsample of 80 were also administered with other scales that are widely used despite not being tailored to DS (Vineland Adaptive Behavior Scales, Child Behavior Checklist, Childhood Autism Rating Scale, Behavior Rating Inventory of Executive Function, Sleep Disturbance Scale for Children).
Results:
The D-DAND captured a broad spectrum of abilities and dysfunctions across multiple functional domains. Test-retest reliability was excellent (overall score: r ≈ .98, median across domains: r ≈ .89), thus allowing for high sensitivity to time-related changes. As expected, D-DAND scores showed high correlations with some standardized measures (e.g., Vineland scales) and low correlation with others, suggesting that D-DAND measures unique, Dravet-specific features that other, widely used tools fail to detect.
Significance:
D-DAND is a novel, reliable tool for comprehensive evaluation of DS beyond seizures. It enables systematic tracking of developmental and behavioral issues in DS, facilitating early identification of needs and more personalized, whole-person care.
