Caregiver burden associated with caring for individuals with tuberous sclerosis complex-associated seizures: A descriptive, non-interventional survey in Sweden.

ABSTRACT: Tuberous sclerosis complex (TSC)-associated seizures result in a significant burden for caregivers. To quantify time spent and describe activities undertaken by caregivers of individuals with TSC-associated seizures in Sweden, primary caregivers participated in a cross-sectional, non-interventional online survey. Questions comprised patient/caregiver characteristics, care provision, time, and activities associated with generalized seizures or non-seizure-related care. Twenty-three primary caregivers participated; 96 % parents, 100 % female. Median number of caregivers per individual was three. In the last month, median (interquartile range [IQR]) hours for caregiving per week was 52.0 (25.7-100.0; n = 21); median (IQR) hours for non-seizure-related care was 46.7 (20.0-93.3; n = 21) and for

SUBMITTER: Lo SH 

PROVIDER: S-EPMC11787012 | biostudies-literature | 2025 Mar

REPOSITORIES: biostudies-literature