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 generalized seizure-related care was 4.7 (1.7–15.8; n = 12). Beyond the last month, hours/week of generalized seizure-related care varied from 1.9 (0–8.8) to 14.0 (0.5–77.0). Professional/paid carers contributed 99.2 (73.5–127.5) hours/week of care. Non-seizure-related care activities included assisting with routine medical care (n = 22, 96 %) and daily activities (n = 22, 96 %). Activities relating to generalized seizures included assessing the need for (n = 16, 84 %) and giving (n = 17, 89 %) rescue medication, providing physical support (n = 16, 84 %), and clearing the individual’s environment during generalized seizures (n = 13, 68 %). During generalized seizure recovery, activities included taking the individual to bed (n = 18, 95 %), emotional support (n = 14, 74 %), and managing behavioral issues (n = 14, 74 %). In Sweden, despite contributions of paid caregivers, individuals with TSC-associated seizures require substantial time from unpaid primary caregivers, including seizure- and non-seizure-related care. Generalized seizures have a considerable impact on time spent caregiving and the care activities undertaken.