Biniek R, Humpke T, Töpper R
Neurologische Klinik, RWTH Aachen.
Nervenarzt. 1994 Aug;65(8):536-41.
Home ventilation has developed as a sufficient and safe method in many neurological diseases afflicting respiratory functions. To achieve an overview of the situation of these patients in Germany, a questionnaire was distributed by the manufacturer of the most commonly used ventilator in Germany. The patients were asked to send the form back, even anonymous, to the Department of Neurology, RWTH Aachen. 65 of 110 questionnaires were answered, most of patients with muscle dystrophy's (n = 14), Polio (n = 14) and spinal cord injuries (n = 11). Home ventilation in ALS was performed in 3 cases only. The majority of patients (n = 30) was aged between 20 and 49 years, but here were also 5 children younger than 10 years. Most patients were ventilated not more than 4 years, but there were also 5 patients ventilated for over 20 years, all of them Polio-patients. 70% of all lived at home with their relatives, who take care for them. Nevertheless, 13 were full- or part-time working.
家庭通气已发展成为治疗许多影响呼吸功能的神经疾病的一种充分且安全的方法。为了全面了解德国这些患者的情况，德国最常用呼吸机的制造商发放了一份调查问卷。患者被要求将表格寄回，甚至可以匿名，寄往亚琛工业大学神经科。110份问卷中有65份得到回复，大多数患者患有肌肉萎缩症（n = 14）、小儿麻痹症（n = 14）和脊髓损伤（n = 11）。仅3例肌萎缩侧索硬化症患者进行了家庭通气。大多数患者（n = 30）年龄在20至49岁之间，但也有5名10岁以下的儿童。大多数患者通气时间不超过4年，但也有5名患者通气超过20年，他们均为小儿麻痹症患者。所有患者中有70%与亲属同住，亲属照顾他们。尽管如此，仍有13人全职或兼职工作。
