Abstract
The aims of this study were to investigate the recognition gap on the quality of life (QOL) in people with epilepsy (PWE) between the affected pediatric and adolescent patient's families and the attending physicians, and to devise future management strategies for epilepsy based on the results. We conducted a large-scale questionnaire survey on the QOL in 5,122 PWE/their families who were members of the Japanese Epilepsy Association in 2006 and 1,701 PWE/their families and 502 attending physicians responded. Out of the responders, 107 matched pairs of PWE aged under 16 years (with an adult family member actually responding by proxy) and their physicians responding to the questionnaire were examined. The results demonstrated that the physicians were not sufficiently aware of 1) concern about drug therapy for epilepsy from the perspective of their patients/families, 2) ictal and post-ictal symptoms recognized by the patients/their families, and 3) the worry about the disease of the patients/their families. Thus, efforts are needed to minimize the recognition gap within the limited consultation hour in routine clinical practice between children and adolescents having epilepsy/their families and physicians: physicians should efficiently acquire necessary information from PWE/their families, and should negotiate with PWE/their families about the goal of therapy and future management strategies for epilepsy.
