Hudson A J
Department of Clinical Neurological Sciences, University of Western Ontario, London, Canada.
Semin Neurol. 1987 Dec;7(4):344-51. doi: 10.1055/s-2008-1041435.
The patient with ALS can be managed almost entirely as an outpatient by a team consisting of a nurse, physiotherapist, occupational therapist, speech pathologist, nutritionist, respirologist, social worker, and certain other consultants from time to time. The team's goal is to maintain physical function and extend the useful life of the patient through the skills that the team members are trained to provide. Pulmonary function tests, especially spirometry, should be done at regular intervals and a modified barium swallow should also be done at least once in cases with dysphagia. It is possible with these tests to anticipate and even correct a number of hazards, such as upper airway obstruction and aspiration. Some patients are candidates for gastrostomy and tympanic and chorda tympani neurectomy, but full knowledge of their pulmonary function is essential before undertaking any operative procedure. Death in ALS is due to pulmonary failure and the choice of respirator care requires careful deliberation with the family. The neurologist and ALS team should work in close cooperation with the home care personnel in the patient's own community. Does the care of the ALS patient in any way affect survival? In the attempt to answer this question we have estimated the survival of ALS patients in southwestern Ontario, most of whom have visited our clinic over the period of 1978 to 1985, inclusive. As shown in Figure 4, there was an apparent decline in the annual mortality rate over this period, although there was no significant change in the incidence of ALS in this region.(ABSTRACT TRUNCATED AT 250 WORDS)
患有肌萎缩侧索硬化症(ALS)的患者几乎完全可以作为门诊病人,由一个团队来管理。该团队由一名护士、物理治疗师、职业治疗师、言语病理学家、营养师、呼吸科医生、社会工作者以及其他一些顾问组成,这些顾问会不定期参与。团队的目标是通过其成员所接受培训能提供的技能,维持患者的身体功能并延长其生存期。应定期进行肺功能测试,尤其是肺活量测定,对于有吞咽困难的患者,还应至少进行一次改良钡餐吞咽检查。通过这些测试能够预测甚至纠正一些风险,比如上呼吸道阻塞和误吸。一些患者适合做胃造口术以及鼓索神经和鼓室神经切除术,但在进行任何手术之前,全面了解其肺功能至关重要。ALS患者的死亡原因是呼吸衰竭,在选择呼吸护理方式时需要与患者家属仔细商讨。神经科医生和ALS团队应与患者所在社区的家庭护理人员密切合作。对ALS患者的护理会以任何方式影响其生存期吗?为了回答这个问题,我们估算了安大略省西南部ALS患者的生存期,这些患者中的大多数在1978年至1985年期间(含这两年)前来我们诊所就诊。如图4所示,在此期间年死亡率明显下降,尽管该地区ALS的发病率没有显著变化。(摘要截选至250词)