Quality of life in adult patients with epilepsy and their family members

PURPOSE Epilepsy is not only a neurological disorder but may also have negative psychosocial consequences on people with epilepsy (PWE) and their relatives. Epilepsy has a major impact on quality of life (QoL) in PWE and family members. However, less is known about the impact of family support and family functioning on quality of life for PWE and family members and their interaction. Therefore, the study aimed to investigate factors that influence QoL in hospitalized adult patients with epilepsy and their relatives. METHOD An explorative cross-sectional study has been conducted in a tertiary clinic in Switzerland. Hospitalized adult patients with epilepsy and their relatives were enrolled in the study. Subjective QoL as well as family support and family functioning were measured with patients and family members. Patients and their relatives assessed the patients' support need and their satisfaction with the care provided. In addition, patients were administered a disease-related HRQoL measure (QoLIED-36, Version 2). Backward stepwise multivariate linear regression analysis was used to explain variances in patients and relatives' subjective QoL. RESULTS One hundred and four dyads of patient and family member participated. Subjective QoL in patients and family members differed significantly, as did satisfaction with care delivery. In both groups family support contributed significantly to QoL. In the models 40% of the variance in QoL in patients and relatives could be explained. While the quality of life of the family members was affected by the patients' knowledge about the disease and the reason for their current hospitalization, patient QoL scores had no influence on the QoL of family members. The patients' QoL, however, depended significantly on the QoL of the family members. CONCLUSION Interventions should address both PWE and family members and focus on the self-care improvement of PWE and the well-being and coping of family members. A patient-centred approach needs to include both the PWE and the relatives and address family support in order to alleviate stress in the patients and relatives alike.