Abstracts

Rationale: To provide appropriate employment and educational opportunities and, then, to improve quality of life for persons with epilepsy (PWE), we aim to bridge the gaps among employment, educational and medical systems. In this pilot study, we examined the current statuses of employment and educational systems of PWE. Methods: To evaluate the problems in the employment systems, we sent questionnaires to employment support institutions (ESI) (648 Public employment services (PES), 334 Employment and life support center for people with disabilities (ELSC), and 52 Regional vocational rehabilitation centers for persons with disabilities (RVRC)). To evaluate the problems in the educational systems, we sent questionnaires to nursing teachers (900 sampled schools, including 45 special support schools) covering all over Japan. Results: From ESI, we got 337 responses from PES (52.0%), 73 from ELSC (21.9%), and 37 from RVRC (71.2%). In ESI, 3.0% in PES, 2.7% in ELSC, and 3.3% in RVRC of whole handicapped persons using their institutions have epilepsy. However, only 1.3% (PES) and 3.1% (ELSC) of PWE were introduced by medical institution. Staffs of ESI thought that PWE could not get jobs because companies don’t know 1) what to do for seizures (96.1%, 91.8%, and 100% PES, ELSC, and RVRC respectively), 2) what is epilepsy (96.1%, 94.5%, and 100%), and 3) reasonable accommodation for PWE (94.7%, 84.9%, and 94.6%). It was, then, demonstrated that staffs of ESI want to have essential information about PWE from medical institutions; i.e., seizure type, frequency, and first-aid to support PWE. On the survey of nursing teachers, 640 responses (71.1%) (34 from special support schools) were collected. In these 640 schools, there are 237,253 students, and 1,565 of them have epilepsy (0.66%). 504 nursing teachers (78.8%) had witnessed epileptic seizures. 542 nursing teachers (84.7%) appropriately understood epilepsy as a neurological disorder. 490 nursing teachers (76.6%) thought education of first-aid for epileptic seizures is necessary for their students. By analyzing 1,398 students’ data collected, nursing teachers recognized their seizure type in 978 students (70.0%). They got information about their epilepsy from medical institution in only 422 students (30.2%). The teachers confirmed their first-aid in 1,105 students (79.0%), but mainly from parents (1069 (96.7%)) and not from medical institution (only 272 (24.6%)). In addition, 219 of 337 PES (65.9%), 62 of 73 ELSC (84.9%), 34 of 37 RVRC (91.9%), and 511 of 640 nursing teachers (79.8%) want to have lectures about epilepsy. Conclusions: In these analyses, it was demonstrated that the networks among employment, educational, and medical systems are not properly functioning. Essential information about epilepsy was not sufficiently provided to employment and educational systems from medical institutions. It was demonstrated that the tools or guidelines to bridge the gaps among these systems are needed. Funding: This research was supported by AMED under Grant Number JP17dk0307068..