Ushikubo M, Kawamura S, Inaba Y, Shima C, Nakamura T
Tokyo Medical & Dental University.
Nihon Koshu Eisei Zasshi. 1998 Jul;45(7):653-63.
The purpose of this study was to identify the characteristics of home care of patients with intractable neurological diseases. A survey was conducted of members of Tokyo Medical Association who were home visit doctors. They responded to questions about their patients who have suffered from either Parkinson's disease (PD), spinocerebellar degeneration (SCD), or amyotrophic lateral sclerosis (ALS), and whose home care have been supported by the care system for at least three months. Of 205 survey questionnaires collected, 198 were effective to be analyzed. The sample consisted of 105 patients with PD (53.0%), 63 patients with SCD (31.8%), and 30 patients with ALS (15.2%). The mean age of the PD was 75.5 years with a range of 53 to 90, SCD was 66.5 years with a range of 39 to 88, and ALS was 58.7 years with a range of 42 to 86. The major findings in this study were as follows: 1) The patients who had one or more medical equipment installed at the beginning of home care were 30% of ALS, 9% of PD and 18% of SCD. As time elapsed, patients who needed to have some medical equipment installed increased in ALS greater than in PD and SCD. 2) The home doctors predicted that the condition of 37% of ALS patients, 9% of PD, and 8% of SCD would probably be deteriorating within one month. 3) Of the 30 patients with ALS, 47% experienced hospitalization three times or more compared to 27% of PD and 21% of SCD. The most prevalent reason for hospitalization for ALS was respite of caregivers, PD and SCD, however, were hospitalized for control of prescription, a change for the worse, or treatment of other diseases. 4) Ninety percent of ALS caregivers felt extremely tired or slightly tired. Their home doctors responded that 83% of ALS caregivers did their best in caregiving. 5) ALS patients utilized social resources such as volunteers, care workers, services of supply and maintenance of medical equipment, and emergency care for 24 hours more than SCD and PD. In the conclusion, ALS patients experienced the highest hospitalization of the three diseases and respite of family caregivers was necessary. They showed a higher utilization of various social resources than other diseases. It is important to consider these characteristics of home care patients by diseases in order to prepare and develop the necessary support system of home care for the intractable neurological patients.
本研究的目的是确定难治性神经系统疾病患者居家护理的特点。对东京医学协会中进行家访的医生成员进行了一项调查。他们回答了有关其患有帕金森病（PD）、脊髓小脑变性（SCD）或肌萎缩侧索硬化症（ALS）的患者的问题，这些患者的居家护理已由护理系统支持至少三个月。在收集的205份调查问卷中，198份有效可供分析。样本包括105例帕金森病患者（53.0%）、63例脊髓小脑变性患者（31.8%）和30例肌萎缩侧索硬化症患者（15.2%）。帕金森病患者的平均年龄为75.5岁，范围在53至90岁之间；脊髓小脑变性患者为66.5岁，范围在39至88岁之间；肌萎缩侧索硬化症患者为58.7岁，范围在42至86岁之间。本研究的主要发现如下：1）居家护理开始时安装了一种或多种医疗设备的患者，肌萎缩侧索硬化症患者占30%，帕金森病患者占9%，脊髓小脑变性患者占18%。随着时间的推移，需要安装一些医疗设备的肌萎缩侧索硬化症患者的增加幅度大于帕金森病和脊髓小脑变性患者。2）家庭医生预测，1个月内37%的肌萎缩侧索硬化症患者、9%的帕金森病患者和8%的脊髓小脑变性患者的病情可能会恶化。3）在30例肌萎缩侧索硬化症患者中，47%的患者住院3次或更多次，相比之下，帕金森病患者为27%，脊髓小脑变性患者为21%。肌萎缩侧索硬化症患者住院最常见的原因是照顾者需要喘息机会，而帕金森病和脊髓小脑变性患者住院是为了控制处方、病情恶化或治疗其他疾病。4）90%的肌萎缩侧索硬化症照顾者感到极度疲惫或略有疲惫。他们的家庭医生表示，83%的肌萎缩侧索硬化症照顾者在护理方面尽了最大努力。5）与脊髓小脑变性和帕金森病患者相比，肌萎缩侧索硬化症患者更多地利用了志愿者、护理人员、医疗设备供应和维护服务以及24小时紧急护理等社会资源。总之，在这三种疾病中，肌萎缩侧索硬化症患者的住院率最高，家庭照顾者需要喘息机会。与其他疾病相比，他们对各种社会资源的利用率更高。考虑这些按疾病分类的居家护理患者的特点，对于为难治性神经系统疾病患者准备和开发必要的居家护理支持系统很重要。
