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

Abstract 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,...

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Main Authors: Kentaro Tokumoto, Kiyohito Terada, Norihiko Kawaguchi, Takuji Nishida, Mitsuhiko Yamano, Tomoo Aoyagi, Yuji Tadokoro, Naotaka Usui, Yushi Inoue
Format: Article
Language:English
Published: Wiley 2024-02-01
Series:Epilepsia Open
Subjects:
Online Access:https://doi.org/10.1002/epi4.12874
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author Kentaro Tokumoto
Kiyohito Terada
Norihiko Kawaguchi
Takuji Nishida
Mitsuhiko Yamano
Tomoo Aoyagi
Yuji Tadokoro
Naotaka Usui
Yushi Inoue
author_facet Kentaro Tokumoto
Kiyohito Terada
Norihiko Kawaguchi
Takuji Nishida
Mitsuhiko Yamano
Tomoo Aoyagi
Yuji Tadokoro
Naotaka Usui
Yushi Inoue
author_sort Kentaro Tokumoto
collection DOAJ
description Abstract 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
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spelling doaj.art-8635666c7c8843709e26a0fe93966ead2024-02-05T06:37:58ZengWileyEpilepsia Open2470-92392024-02-019131432410.1002/epi4.12874Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide surveyKentaro Tokumoto0Kiyohito Terada1Norihiko Kawaguchi2Takuji Nishida3Mitsuhiko Yamano4Tomoo Aoyagi5Yuji Tadokoro6Naotaka Usui7Yushi Inoue8National Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanNational Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanNational Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanNational Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanDepartment of General Medicine Tokai University School of Medicine Isehara Kanagawa JapanCocorport Consultation Support Room in Kawasaki Business Division of Comprehensive Support Cocorport Incorporated Kawasaki Kanagawa JapanJapan Epilepsy Association Tokyo JapanNational Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanNational Epilepsy Center National Hospital Organization Shizuoka Institute of Epilepsy and Neurological Disorders Shizuoka JapanAbstract 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 centershttps://doi.org/10.1002/epi4.12874comprehensive epilepsy caredownward referralepilepsy surgerystagnationupward referral
spellingShingle Kentaro Tokumoto
Kiyohito Terada
Norihiko Kawaguchi
Takuji Nishida
Mitsuhiko Yamano
Tomoo Aoyagi
Yuji Tadokoro
Naotaka Usui
Yushi Inoue
Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
Epilepsia Open
comprehensive epilepsy care
downward referral
epilepsy surgery
stagnation
upward referral
title Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
title_full Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
title_fullStr Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
title_full_unstemmed Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
title_short Status of epilepsy care delivery and referral in clinics, hospitals, and epilepsy centers in Japan: A nationwide survey
title_sort status of epilepsy care delivery and referral in clinics hospitals and epilepsy centers in japan a nationwide survey
topic comprehensive epilepsy care
downward referral
epilepsy surgery
stagnation
upward referral
url https://doi.org/10.1002/epi4.12874
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