Dravet Syndrome
Conditions
Keywords
Dravet, occupational therapy
Brief summary
The pandemic has made it necessary to imagine and experiment with new ways for disabled patients to continue their care, responding to the sudden employment and emotional void of this historical period. With this in mind, several studies have shown how telemedicine and telerehabilitation can represent a new frontier in care, reducing costs, shortening distances, increasing continuity of care, and also allowing services to be performed in a comfortable and familiar environment. All these elements also combine to determine a positive effect on the patient's compliance with the therapeutic project, in which he or she finally feels like a protagonist. It is evident that the application of these modalities in the pediatric patient requires the maximum cooperation from the family. In this regard, it has been shown that despite the complexity associated with managing a patient with Dravet syndrome, families want to be involved, showing readiness to invest and participate in meaningful activities for their children.Considering the persistence of the national health emergency and the demonstrated effectiveness of remote occupational therapy in patients with behavioral and adaptive frameworks similar to Dravet patients, it is deemed interesting to test the feasibility of an occupational therapy project following the CO-OP approach (with the child or with the parent) also in this specific population. Moreover, when considering the care gap given by the small number of recognized professionals in the field of occupational therapy and the uneven distribution of such a service across the territory at the expense of rural and disadvantaged areas, remote occupational therapy could be a significant resource for families of children and youth with disabilities even beyond the boundaries of the current COVID emergency.
Interventions
None listed
Sponsors
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
7 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Diagnosis of Dravet Syndrome. * Ages 7-18 years. * Sufficient cognitive and behavioral skills to set goals and participate in treatment * Access and manageability with respect to using a PC/tablet with a stable Internet connection * Sufficient language/communication skills to follow simple instructions and interact with therapist * Willingness/ability of a parent/caregiver in the family to attend all treatment sessions and involve themselves in "parent coaching." It will be necessary to maintain the same parent for the duration of the course.
Exclusion criteria
* Photosensitivity * Organizational difficulties in the family that prevent the continuation of treatment * Ongoing occupational treatment.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| effectiveness of a remote occupational therapy | 5 months | Evaluate the degree of improvement in self-perception of performance and satisfaction with goals achieved in therapy will be assessed during the clinical interview |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| cognitive-behavioral profile | 5 months | Evaluate the results of any effects of the rehabilitation intervention on the cognitive-behavioral profile of patients, thanks to the standardised tests. |
| adaptive behavior. | 5 months | Verify the effects of remote occupational therapy on patients' adaptive behavior in daily life activities, thanks to a questionnaire |
| QOLIE-31 | 5 months | Verify the effects of remote occupational therapy on patients' and their families' quality of life thanks to a questionnaire. |
Countries
Italy
Contacts
PRINCIPAL_INVESTIGATORDomenica Immacolata Battaglia
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Outcome results
None listed