Newrick P G, Langton-Hewer R
Br Med J (Clin Res Ed). 1984 Sep 1;289(6444):539-42. doi: 10.1136/bmj.289.6444.539.
A feeling that patients with motor neurone disease were not always well managed prompted a study of the symptoms, functional levels, and use of aids in a group of 42 patients. Pain, falls, constipation, and swelling of the legs emerged as the major symptomatic problems. At the time of assessment two thirds of the patients appeared to be in need of aids which had not been provided. Disturbance of sleep secondary to positional nocturnal discomfort caused much distress to both the patient and spouse; and this might be eased by the use of an electric turning bed. Over half the patients said that they disliked attending neurology outpatient clinics. Criticism centred on poor transport arrangements, lack of information about the control of symptoms, and unsatisfactory help from junior staff. A key worker should be identified as part of a new strategy for managing these patients.
运动神经元病患者并非总能得到妥善管理，这种感觉促使对42名患者的症状、功能水平及辅助器具使用情况进行了一项研究。疼痛、跌倒、便秘和腿部肿胀成为主要的症状问题。在评估时，三分之二的患者似乎需要辅助器具，但尚未得到提供。夜间体位不适导致的睡眠障碍给患者及其配偶都带来很大困扰；使用电动翻身床可能会缓解这种情况。超过半数的患者表示不喜欢去神经科门诊就诊。批评主要集中在交通安排不佳、缺乏症状控制方面的信息以及初级医护人员提供的帮助不尽人意。应确定一名关键工作人员，作为管理这些患者新策略的一部分。
