Iwaki Miho, Tateishi Takahisa, Kikuchi Hitoshi, Kira Jun-ichi
The Fukuoka Prefectural Medical Committee for Intractable Disease, Fukuoka Prefectural Government.
Gan To Kagaku Ryoho. 2006 Dec;33 Suppl 2:251-3.
The Fukuoka Prefectural Medical Health Care Network for Seriously Intractable Neurological Diseases was initiated in 1998 to improve the care of patients for seriously intractable neurological diseases. The network, now, consists of 15 basic cooperative hospitals, and 105 general cooperative hospitals. Two medical care coordinators manage the transfer of network patients based on information of the patient's condition and the capacity of cooperative hospitals using information about the number of available beds in cooperative hospitals. A total number of patients with seriously intractable neurological diseases who were referred to the network for the last eight years was 277, 163 of whom were amyotrophic lateral sclerosis (ALS) patients and of which 75 of them were under mechanical ventilation. Of these 277 patients, 253 were successfully transferred to chronic care hospitals or referred to regional visiting physicians through the network. Cooperative and non-cooperative hospitals accepted 157 and 49 patients, respectively, while 38 were referred to visiting physicians. A number of medical care consultations has increased year by year, and reached 17,652 in the eighth year. The main issues for these consultations were to make hospital arrangements for a patient. Comprehensive long-term care is necessary for Japanese ALS patients because one-third is under mechanical ventilation. Despite this, it is still difficult to secure available beds for such patients who require long-term care. In the future, it will be necessary to improve the support for an environment for home care and to make the system in which cooperative hospitals support patients during the home care.
福冈县难治性神经疾病医疗保健网络于1998年启动，旨在改善难治性神经疾病患者的护理。该网络目前由15家基本合作医院和105家一般合作医院组成。两名医疗协调员根据患者病情信息和合作医院的能力，利用合作医院的可用床位数信息来管理网络患者的转诊。过去八年中被转诊至该网络的难治性神经疾病患者总数为277人，其中163人为肌萎缩侧索硬化症（ALS）患者，其中75人需要机械通气。在这277名患者中，253人通过该网络成功转诊至慢性病医院或转诊给地区上门医生。合作医院和非合作医院分别接收了157名和49名患者，另有38人被转诊给上门医生。医疗咨询的数量逐年增加，在第八年达到了17652次。这些咨询的主要问题是为患者安排住院。由于三分之一的日本ALS患者需要机械通气，因此对他们进行全面的长期护理是必要的。尽管如此，为这些需要长期护理的患者确保可用床位仍然很困难。未来，有必要加强对家庭护理环境的支持，并建立合作医院在家庭护理期间支持患者的系统。
