Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey.

OBJECTIVE: Collaboration among medical facilities is crucial to deliver comprehensive epilepsy care to a diverse and large population of people with epilepsy. We conducted a survey among medical facilities of various sizes throughout Japan to investigate the status of epilepsy care delivery, functioning, and referral. METHODS: With the cooperation of the Japan Neurological Society (1428 facilities), Japanese Neurosurgical Society (3489 specialists), and Epilepsy Care Network (948 facilities), a questionnaire was mailed to 5865 locations that provide epilepsy care in Japan. The facilities were classified into clinics (19 beds or less), small hospitals (SH, 20-199 beds), large hospitals (LH, 200 beds or more), and epilepsy centers (EC). The status of epilepsy care delivery, functioning, and referral was compared among the four groups. RESULTS: Responses were received from 1014 facilities (17.3% response rate). After excluding duplicate responses, 957 facilities were analyzed (394 clinics, 149 SH, 388 LH, 26 EC). EC responded "manageable" in more items of epilepsy care functions in general, especially those related to epilepsy surgery, compared to LH with similar facility size. However, EC responded being less manageable in psychiatric service (61.5%), dietary therapy (46.2%), rehabilitation (53.8%), and patient employment support (61.5%). The percentage of facilities that responded "always able to refer" was highest in clinics (67.6%) and the lowest in EC (40%). Referral difficulties were more commonly encountered in EC, and less common in clinics. In EC, the most common reason for inability to refer was patient or family refusal (64%). SIGNIFICANCE: We have clarified the epilepsy care delivery, functioning, and referral in facilities of various sizes in Japan. This study highlights the issues of downward referral and patient stagnation in EC, which have not received much attention. PLAIN LANGUAGE SUMMARY: A nationwide survey of healthcare facilities ranging in size from small clinics to large hospitals in Japan examined medical care delivery and patient referrals related to epilepsy. Compared to other facilities, epilepsy centers provided a variety of medical services to people with epilepsy but were inadequate in addressing psychiatric symptoms, providing dietary therapy, rehabilitation, and patient employment support. Referrals from epilepsy centers to other medical facilities were often refused by patients and their families. This results in patient crowding at epilepsy centers.

Nurse teachers' knowledge about epilepsy and communication issues between schools and medical institutions: A nationwide questionnaire survey in Japan.

OBJECTIVE: The importance of school teachers' knowledge of and attitudes toward epilepsy and the communication between educational and medical systems is widely appreciated, but exploration of these factors in Japan has been extremely limited. In order to identify issues in support systems for students with epilepsy and bridge the gaps in communication between schools and medical institutions in Japan, we performed a nationwide questionnaire survey of nurse teachers (nurses in charge of health education/care at schools). METHODS: We mailed a questionnaire to 900 nurse teachers all over Japan. It included six items on general epilepsy knowledge and 15 items on information about each student with epilepsy in their schools. We used a modified grounded theory approach (M-GTA) to analyze open-ended questions. RESULTS: We received responses from 640 (71.1%) nurse teachers. In their schools, there were 237 253 students, of whom 1565 had epilepsy. Most nurse teachers (84.7%) understood that epilepsy is a neurological disease. When performing first aid for a seizure, they would observe the seizure calmly (85.9%) and/or secure the airway (75.3%). There were 1398 responses about individual students with epilepsy (89.3%). Nurse teachers knew the seizure type in 70.0% of these students, seizure frequency in 76.8%, triggers in 38.9%, and appropriate first aid for 79.0%. Some nurse teachers (30.2%) obtained information on students with epilepsy from medical institutions. They knew more about their students' seizures than those without medical information. Existing forms for communicating information on students with epilepsy between schools and physicians were not actively utilized. Responses to open questions converged on safety at school. SIGNIFICANCE: Japanese nurse teachers understand epilepsy relatively well, but do not fully grasp the condition of each student with epilepsy. Better information flow from medical institutions is needed. Active communication is necessary to support the safety of students with epilepsy at school.