Fact-finding survey on regional healthcare services for patients with epilepsy based on a questionnaire administered to public health centers in Japan

Abstract

Epilepsy is a common chronic neurological disorder characterized by recurrent unprovoked seizures. The prevalence of epilepsy is about 1%, and its incidence is increasing with the aging population. In addition to their medical problems, epilepsy patients face many social problems, including schooling, working, and maintaining their driver's licenses. However, these problems are not fully recognized by the regional healthcare centers (HCCs), and the inadequacy of collaboration between medical services, healthcare, and welfare is sometimes pointed out. Under these circumstances, this fact-finding survey was administered in the form of a questionnaire to HCCs across the nation for the purpose of improving the support system and educational activities for epilepsy in Japan. A mail-back survey on regional healthcare services for epilepsy patients was sent out to 490 HCCs across the nation. Public health nurses (PHNs) responded to the self-completed questionnaire on behalf of each HCC. The questionnaire was comprised of the presence or absence of consultations on epilepsy, content of the consultations, and holding of workshops, lectures, or conferences in the community covered by the HCC. We obtained responses from 347 HCCs (response rate 71%). Seventy-three percent of the PHNs had experience with consultations regarding the medical and healthcare issues associated with epilepsy. However, only 10% of the PHNs responded that they could provide appropriate consultation for these issues. The content of the consultations mainly included medical services, clinical symptoms of epilepsy, and anxieties about their social life and their future. Workshops, lectures, or conferences on epilepsy were held for residents or health and welfare professionals in only 8% of the communities. This percentage is lower than those (21-70%) for other intractable or mental disorders that are mainly managed by HCCs (P<0.01). On the other hand, 76% of PHNs in the HCCs felt the need for knowledge about epilepsy, and 60% wanted to join the epilepsy educational programs. Although many PHNs belonging to HCCs conduct consultations regarding epilepsy-related issues, many feel they cannot adequately respond to these issues. Furthermore, they feel the need for further knowledge about epilepsy but are not able to gain such knowledge because of financial and geographical restrictions. To improve these situations, regional education programs for epilepsy should be established in each local municipality in the future with support provided by medical facilities, regional medical associations, the Japan Epilepsy Society, and the Government.