Caregiver burden and care context in families with Dravet
syndrome − a nationwide study in the Czech Republic

J 2026

Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic

BÚŘILOVÁ, Petra; Jan VINKLÁREK; Jiří BÚŘIL; Lucie MICZOVÁ; Andrea POKORNÁ et al.

Základní údaje

Originální název

Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic

Autoři

BÚŘILOVÁ, Petra; Jan VINKLÁREK; Jiří BÚŘIL; Lucie MICZOVÁ; Andrea POKORNÁ a Irena DOLEŽALOVÁ

Vydání

Epilepsy and Behavior, SAN DIEGO, Academic Press Inc. 2026, 1525-5050

Další údaje

Typ výsledku

Článek v odborném periodiku

Stát vydavatele

Spojené státy

Impakt faktor

Impact factor: 2.300 v roce 2024

Označené pro přenos do RIV

Klíčová slova anglicky

Burden; Caregiving; Dravet syndrome; Epilepsy; Quality of life; Registry

Změněno: 3. 9. 2026 13:10, PhDr. Petra Búřilová, Ph.D., BBA

Anotace

V originále

Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy characterized by early-onset, drug-resistant seizures and significant long-term neurodevelopmental impairment. This cross-sectional observational study aimed to assess demographic characteristics and caregiving burden among individuals with DS and their informal caregivers in the Czech Republic, and to contribute to estimating disease prevalence and informing the need for national monitoring systems. Data were collected via a questionnaire distributed to informal caregivers (n = 44) between March and May 2025, incorporating the Caregiver Burden Scale and sociodemographic items. With a mean age of 41.5 years, mothers made up the majority of caregivers (93.2%), and they typically reported lower employment engagement. Approximately 34.9% of carers reported mental or psychiatric conditions. Patients (mean age 9.5 years) required extensive assistance across multiple domains of daily functioning. Caregiving burden was substantial, with stress reported in most domains, particularly medication management, supervision, transportation, and household-related activities. Limited access to respite care services was common, primarily due to insufficient availability and financial constraints. The findings highlight the high multidimensional burden associated with DS, affecting caregivers. The absence of systematic national data collection complicates epidemiological assessment and healthcare planning. Establishing a national registry and improving access to support services are essential for optimizing care and reducing caregiver burden. These results provide important baseline data for future research and policy development.

Citovat

BÚŘILOVÁ, Petra; Jan VINKLÁREK; Jiří BÚŘIL; Lucie MICZOVÁ; Andrea POKORNÁ a Irena DOLEŽALOVÁ. Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic. Epilepsy and Behavior. SAN DIEGO: Academic Press Inc., 2026, roč. 184. ISSN 1525-5050. Dostupné z: https://doi.org/10.1016/j.yebeh.2026.111216.

@article{2587225,
   author = {Búřilová, Petra and Vinklárek, Jan and Búřil, Jiří and Miczová, Lucie and POKORNÁ, Andrea and Doležalová, Irena},
   article_location = {SAN DIEGO},
   doi = {https://doi.org/10.1016/j.yebeh.2026.111216},
   keywords = {Burden; Caregiving; Dravet syndrome; Epilepsy; Quality of life; Registry},
   issn = {1525-5050},
   journal = {Epilepsy and Behavior},
   title = {Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic},
   volume = {184},
   year = {2026}
}

TY  - JOUR
ID  - 2587225
AU  - Búřilová, Petra - Vinklárek, Jan - Búřil, Jiří - Miczová, Lucie - POKORNÁ, Andrea - Doležalová, Irena
PY  - 2026
TI  - Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic
JF  - Epilepsy and Behavior
VL  - 184
PB  - Academic Press Inc.
SN  - 15255050
KW  - Burden
KW  - Caregiving
KW  - Dravet syndrome
KW  - Epilepsy
KW  - Quality of life
KW  - Registry
N2  - Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy characterized by early-onset, drug-resistant seizures and significant long-term neurodevelopmental impairment. This cross-sectional observational study aimed to assess demographic characteristics and caregiving burden among individuals with DS and their informal caregivers in the Czech Republic, and to contribute to estimating disease prevalence and informing the need for national monitoring systems. Data were collected via a questionnaire distributed to informal caregivers (n = 44) between March and May 2025, incorporating the Caregiver Burden Scale and sociodemographic items. With a mean age of 41.5 years, mothers made up the majority of caregivers (93.2%), and they typically reported lower employment engagement. Approximately 34.9% of carers reported mental or psychiatric conditions. Patients (mean age 9.5 years) required extensive assistance across multiple domains of daily functioning. Caregiving burden was substantial, with stress reported in most domains, particularly medication management, supervision, transportation, and household-related activities. Limited access to respite care services was common, primarily due to insufficient availability and financial constraints. The findings highlight the high multidimensional burden associated with DS, affecting caregivers. The absence of systematic national data collection complicates epidemiological assessment and healthcare planning. Establishing a national registry and improving access to support services are essential for optimizing care and reducing caregiver burden. These results provide important baseline data for future research and policy development.
ER  -

BÚŘILOVÁ, Petra; Jan VINKLÁREK; Jiří BÚŘIL; Lucie MICZOVÁ; Andrea POKORNÁ a Irena DOLEŽALOVÁ. Caregiver burden and care context in families with Dravet syndrome − a nationwide study in the Czech Republic. \textit{Epilepsy and Behavior}. SAN DIEGO: Academic Press Inc., 2026, roč.~184. ISSN~1525-5050. Dostupné z: https://doi.org/10.1016/j.yebeh.2026.111216.

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