Caregiver Burden in Epilepsy in Greece

Aim: Due to its chronicity and unpredictability, epilepsy confers significant burden to its bearers and their loved ones, affecting their quality of life (QOL). Contrary to persons with epilepsy (PWE), little is known about caregiver burden (CB) and QOL in Greece and worldwide. Here we attempt to identify the magnitude of epilepsy burden to Greek caregivers, explore factors associated with it and compare it with that from an international PWE-caregivers cohort. Methods: Patients were recruited from the outpatient epilepsy clinic in the university hospital of Alexandroupolis and from the epilepsy monitoring unit of two academic hospitals in Boston. 49 Greek and 126 American PWE and their 31 Greek and 48 American caregivers, respectively, completed questionnaires providing demographic, disease-related, psychiatric, cognitive, sleep, QOL and burden information. Results: Compared to the American patients, Greek patients were more commonly unemployed, of lower educational attainment and with lower neuropsychological scores. Their disease was overall under better control with fewer antiepileptic drugs (AED). They exhibited lower indices of depression, anxiety and sleepiness. Greek caregivers were often parents or siblings as opposed to spouses in the US cohort; they also had lower educational attainment and spent, on average, more time for patient care. Overall, patient QOL appeared worse in the US vs the Greek population while CB did not differ significantly between the two cohorts. On regression analysis for the combined cohort, the number of AED and the time allocated to patient care were associated with higher CB. The latter attained statistical significance for the US cohort and approximated statistical significance for the Greek cohort independently. Conclusion: In a selected PWE-caregiver Greek cohort attending the outpatient epilepsy clinic, we identified modest degree of CB, comparable to a US cohort and to what is reported in the literature for other chronic neurological conditions. Time allocated to patient care emerged as the most consistent factor associated with that burden.