Abstract
The aims of this survey were to ascertain differences in the recognition of clinical manifestations related to quality of life (QOL) in patients with epilepsy between the patients/their families and attending physicians and to apply the results to future management of epilepsy. We mailed questionnaires to 5,122 epilepsy patients/their families, all of whom are members of the Japanese Epilepsy Association, and collected them from 1,701 patient/family member respondents and 502 attending physicians. The recognition differences in 427 pairs, matching a patient/family member with an attending physician, were examined. The results revealed that patients and their families put more importance on reducing seizure severity than on reducing seizure frequency in terms of drug therapy goals, and that they are more troubled by seizure-related symptoms, adverse events due to antiepileptic drugs, etc. than their physicians expected. As bridging the gap in recognition between patients/their families and physicians can lead to QOL improvements, a support scheme for patients will need to be established in order to facilitate communication during the limited hours of medical institutions. To be precise, physicians should encourage their patients to keep seizure notebooks and discuss their concerns, using the notebook, each time they visit the out-patient clinic.
