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Creation and validation of an ad hoc scale for Dravet Syndrome.

The scale under construction aims to evaluate and quantify the problems that are most frequently associated with epilepsy in Dravet syndrome, in order to monitor the patient's evolution over time and the effectiveness of rehabilitation interventions, with a perspective that goes beyond the course of epilepsy itself.

From the review of the literature it has emerged, to date, the lack of assessment scales of the handicap and of the other problems associated with Dravet syndrome, and a working hypothesis has therefore been created that would allow the creation of a check-list easy to use that would help in close monitoring of patients over time.

Various general and specific quality of life scales for the population with epilepsy were examined, relating to adaptive skills in various areas of life, motor skills, regarding the quality of sleep.

A pilot version of the scale has been created which includes eleven domains (gross motor skills, fine motor skills, social interaction, language and communication, autonomy, memory and school learning, emotional problems, attentional and memory executive malfunction, non-adaptive behaviors, sleep, nutrition. ), which could be grouped into four macro-areas (Adaptive skills, Behavioral and emotional problems, Sleep / nutrition regulation). Each domain is made up of a variable number of subdomains (from 4 to 11), and each subdomain is made up of a variable number of items (from 3 to 11), for a total of 244 items. The items within each sub-domain, as far as adaptive competences are concerned, are graded by the presence of competences, from minor to major (eg. Run: a) does not run, b) runs trotting, c) runs falling sometimes , d) runs in a coordinated manner with changes of direction and without falling). The items relating to the Behavioral and emotional problems part are graded by the presence of malfunctions, from major to minor (e.g. Switch quickly from one activity to another: a) quickly switch from one activity to another, b) some minute on an activity and then move on to another thing, c) manages to keep the attention towards a game or activity in a prolonged and autonomous way).

Following the administration of the checklist to a group of patients, the proposed items will be reviewed and any changes will be made.

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Recognized as legal personality with provision of the Regional Council of Veneto dated 09.12.2015 n ° 815.

Agreement with the AOUI of Verona Prot. 1306 of 12/01/2021. Approved with Resolution no. 1392 of 12/30/2020

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