New Dravet-specific assessment scale offers deeper insights into patient development and behaviour

Researchers have developed the D-DAND scale, a specialised interview tool to monitor the multifaceted impact of Dravet syndrome, capturing motor, behavioural, sleep and communication challenges often missed by broader assessments.

Researchers have developed a new caregiver interview designed to measure the day-to-day impact of Dravet syndrome beyond seizures, offering clinicians a structured way to track motor, communication, behaviour, sleep and feeding problems over time. The Dravet Disease-Associated Neuropsychiatric Disorders scale, or D-DAND, was created to fill what the authors describe as a gap in existing tools, many of which were borrowed from other conditions and were not built for the severe and changing profile of Dravet syndrome.

According to the Wiley study, the scale was shaped by an international expert panel and refined through repeated rounds of discussion with clinicians, neuropsychologists and a family representative, alongside feedback from caregivers in Italy and France. The final version contains 63 items and is organised around five broad areas: motor abilities, language and social interaction, autonomy, academic skills, and behavioural and emotional problems. Sleep is assessed separately because those questions do not fit the same scoring method as the rest of the interview. The researchers said the aim was not simply to shorten existing questionnaires, but to create a DS-specific tool that could capture problems often missed in routine epilepsy follow-up.

The study included 123 people with confirmed Dravet syndrome aged three years and older, recruited from specialist centres in Italy and France. One group completed D-DAND alongside commonly used external scales such as the Vineland Adaptive Behavior Scales, the Child Behavior Checklist and the Childhood Autism Rating Scale. A second group completed D-DAND twice, about two weeks apart, allowing the team to test whether the interview produced stable results over time. The researchers reported strong short-term reliability overall, with the global score showing especially high stability, while correlations with non-Dravet-specific tools ranged from weak to strong depending on how closely the measures overlapped.

That pattern, the authors said, is part of the point. In some areas, especially adaptive and motor skills, D-DAND lined up closely with established measures. In others, including feeding and some autism-related behaviours, the relationships were much weaker, suggesting that standard scales do not fully capture the lived impact of Dravet syndrome. The study also found age-related change in several domains: some abilities improved with age, while others, including certain behavioural and social-communication difficulties, worsened. Sleep duration also declined. The researchers said this underlines the need for a systematic, repeatable assessment that can detect both improvement and decline.

Related work in the field points in the same direction. Dravet Italia has promoted development of a syndrome-specific checklist for monitoring progression and rehabilitation, while recent studies on quality of life, disease severity and motor function have reinforced the case for broader assessment beyond seizure counts alone. The new scale is intended to support that wider view in everyday practice, helping doctors and families discuss developmental progress, behavioural concerns and possible referrals more consistently. The authors said the tool is useful for monitoring, but not for comparing children with typically developing peers, and that further validation in larger and more diverse populations will be needed.