Abstracts

Rationale: Epilepsy is a chronic, unpredictable and often debilitating disorder that affects not only its bearers but also those who care for them. In contrast to other chronic neurological and medical conditions, the burden of epilepsy to the caregiver constitutes an understudied area, particularly in the adult population. Here we attempt to identify the magnitude of this burden, its determinants and its impact to the caregiver quality of life (QOL). Methods: The study population comprised of 126 epilepsy patients who underwent long term video EEG monitoring at Massachusetts General Hospital and Boston University Medical Center along with 48 caregivers who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, psychiatric, sleep and epilepsy specific quality of life information, and underwent bedside cognitive evaluation on the first day of their admission. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Electrophysiologic, radiologic and laboratory data were gathered for each patient as part of standard practice. Univariate and multivariate regression analysis was used to identify patient and caregiver related determinants of disease burden to the caregiver and correlation was sought between caregiver burden and caregiver quality of life.Results: The mean age of the patients was 38 years. The majority suffered from symptomatic temporal lobe epilepsy. Their overall QOL score (QOLIE-31) was 51. The mean age of the caregivers was 46. Their average burden score (ZCBI) was 21. The physical component scale of their QOL score (SF36v2, PCS) averaged 54 points while the mental component scale (SF36v2, MCS) averaged 45 points. In a univariate analysis, higher number of antiepileptic drugs (AEDs), poorer patient neuropsychological performance, lower scores on specific subscales of patient s QOL assesment, including the overall score, and more time allocated to patient care were strong determinants of the higher disease burden to caregivers. In multivariate analysis, the same determinants plus lower caregiver education level were correlated with caregiver QOL, while the time spent on patient care approximated by did not attain statistical significance. There was a statistically significant moderate inverse correlation between the caregiver burden and the caregiver QOL physical component scale score (r=-0.35) and a stronger inverse correlation between the caregiver burden and the caregiver QOL mental component scale score (r=-0.57).Conclusions: There is substantial caregiver burden in epilepsy, comparable to other chronic neurological conditions. This burden appears to be associated with specific patient and caregiver characteristics and affects the caregiver quality of life considerably. These findings call for further investigation of the caregiver burden and quality of life in epilepsy and for their inclusion in the physician s treatment plan and proposed quality measures for epilepsy care.