Search

Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p = 0.90, RAND-36 MCS: -2 points; p = 0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p < 0.01, RAND-36 MCS -10 points; p < 0.01). However, on several specific domains, associations between patient and caregiver HRQOL scores within couples were found. Passive coping style explained 50% of variation in HRQOL scores of caregivers. As a group, caregivers of epilepsy patients have normal HRQOL, but there are significant associations between patient and caregiver HRQOL scores. Improving caregiver HRQOL through interventions on coping style might benefit patients as well. Recognizing personal coping styles of both patient and caregiver should be part of a patient-oriented approach in treatment.

Having epilepsy has a large impact on one's well-being, but often seizure frequency and severity do not explain self-reported quality of life. We hypothesized that one's personal coping style is more important. In this study, 105 patients attending the outpatient neurological clinic at the University Medical Centre in Utrecht, the Netherlands, with a diagnosis of partial epilepsy, aged 17-80 years, completed questionnaires. Demographic information, disease characteristics, health-related quality of life (HRQoL), and coping styles were obtained by postal-validated HRQoL questionnaires: the EQ5D and RAND-36 and the Utrecht Coping List. A passive coping style explained 45% of the variance in the mental component of HRQoL and was more important than 'objective' seizure-related measures. Confounders such as employment, gender, and side-effects of treatment explained another 6%. Passive coping style also influenced the physical component of the HRQoL, but here seizure-related factors predominated. Overall, epilepsy patients showed a more avoiding coping style, and female patients a less active coping style and more reassuring thoughts, compared to the Dutch population. The personal coping style of patients appears to be more important than seizure-related measures in predicting mental aspects of quality of life. Coping style characteristics rather than disease characteristics should guide clinical decision-making in patients with epilepsy. Further studies should investigate the effect on HRQoL of behavioral interventions to improve coping.