03 May Dravet Syndrome – The Polish Family’s Perspective Study
Dravet Syndrome – The Polish Family’s Perspective Study
A new publication coming from Poland offers detailed information about Dravet Syndrome population. The survey was conducted on 55 caregivers and considers different factors other than seizures that are reducing the quality of life in such patients.
Organized by the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL., the paper talks about the families’ experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems.
The study group was comprised of patients aged between 2 and 25 years, out of which 25 female (45%) and 30 male (55%).
As a general conclusion of all the observations made through this survey, the authors say that families must be counselled on non-pharmacologic strategies to reduce seizure risk, including avoidance of triggers that commonly induce seizures (including hyperthermia, flashing lights and patterns, sleep abnormalities). In addition to addressing seizures, holistic care for a patient with Dravet Syndrome must involve a multidisciplinary team that includes specialists in physical, occupational and speech therapy, neuropsychology, social work.