Abstracts

Rationale: For clinical studies of chronic disease, including epilepsy, health-related quality-of-life (HRQOL) is an important outcome parameter. The emphasis usually lies on the patient and far less on the caregivers. This study explores the impact of intractable epilepsy on HRQOL of caregivers. Methods: Of 64 patients previously rejected for epilepsy surgery, and their caregivers, 37 (58%) returned questionnaires evaluating social and medical status, HRQOL (SF-36 and EQ5D) and experienced burden of care. Results: The SF36 mental component score (MCS) in caregivers was 3 points lower than Dutch norm scores (p=0.07). Variation in caregiver MCS was not explained by patient characteristics such as seizure frequency, employment status, and their own MCS. MCS was lower in caregivers reporting a high burden of care on a visual analogue scale (-4 points, p=0.09). Conclusions: We conclude that responsibility for patients with intractable epilepsy affects the mental well-being of caregivers. Because this is not related to the severity of epilepsy, we think that the coping style of the caregiver is an important factor. HRQOL of caregivers should be considered in the medical care for patients with intractable epilepsy.