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Article

Dravet Syndrome—The Polish Family’s Perspective Study

1
Department of Pediatric Neurology, Faculty of Medical Sciences in Katowice, Medical University of Silesia, 40-752 Katowice, Poland
2
Students’ Scientific Society, Department of Pediatric Neurology, Faculty of Medical Sciences in Katowice, Medical University of Silesia, 40-752 Katowice, Poland
3
Clinic of Paediatric Neurology, National Research Institute of Mother and Child, 01-211 Warsaw, Poland
*
Author to whom correspondence should be addressed.
Academic Editor: Umberto Aguglia
J. Clin. Med. 2021, 10(9), 1903; https://doi.org/10.3390/jcm10091903
Received: 16 March 2021 / Revised: 9 April 2021 / Accepted: 15 April 2021 / Published: 28 April 2021
(This article belongs to the Section Clinical Neurology)
Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems. The survey received 55 responses from caregivers of patients with DS (aged 2–25 years). Results: Prior to the diagnosis of DS, 85% of patients presented with status epilepticus lasting more than 30 min, and the frequency of seizures (mostly tonic-clonic or hemiconvulsions) ranged from 2 per week to hundreds per day. After the diagnosis of DS, patients remained on polytherapy (drugs recommended in DS). Before diagnosis, some of them had been on sodium channel blockers. Most patients experienced many adverse effects, including aggression and loss of appetite. The frequency of adverse effects was related to the number of drugs used in this therapy, which had an impact on the results of the PedsQL form, particularly in terms of the physical and social spheres. Intensive care unit stays due to severe status epilepticus also had an influence on the results of the PedsQL form. Conclusions: Families must be counseled 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. View Full-Text
Keywords: Dravet syndrome; epilepsy; children; quality of life Dravet syndrome; epilepsy; children; quality of life
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MDPI and ACS Style

Paprocka, J.; Lewandowska, A.; Zieliński, P.; Kurczab, B.; Emich-Widera, E.; Mazurczak, T. Dravet Syndrome—The Polish Family’s Perspective Study. J. Clin. Med. 2021, 10, 1903. https://doi.org/10.3390/jcm10091903

AMA Style

Paprocka J, Lewandowska A, Zieliński P, Kurczab B, Emich-Widera E, Mazurczak T. Dravet Syndrome—The Polish Family’s Perspective Study. Journal of Clinical Medicine. 2021; 10(9):1903. https://doi.org/10.3390/jcm10091903

Chicago/Turabian Style

Paprocka, Justyna, Anita Lewandowska, Piotr Zieliński, Bartłomiej Kurczab, Ewa Emich-Widera, and Tomasz Mazurczak. 2021. "Dravet Syndrome—The Polish Family’s Perspective Study" Journal of Clinical Medicine 10, no. 9: 1903. https://doi.org/10.3390/jcm10091903

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