Palmer Jonathan, Messer Ben, Ramsay Michelle
Department of Thoracic Medicine, University Hospitals NHS Trust, Derriford Hospital, Plymouth, UK.
North East Assisted Ventilation Service, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Royal Victoria Infirmary, Newcastle upon Tyne, UK, and.
Amyotroph Lateral Scler Frontotemporal Degener. 2022 Feb;23(1-2):35-41. doi: 10.1080/21678421.2021.1916534. Epub 2021 May 8.
Motor neurone disease (MND) is characterized by rapidly progressive motor neurone degeneration which leads to muscle wasting. Mortality and morbidity are due to respiratory muscle failure which may be offset by ventilation. The aim of this observational study was to quantify the number and characteristics of patients living with MND choosing tracheostomy ventilation (TV) in the UK. : Long-term ventilation services in the UK were invited to undertake a retrospective 5-year audit of MND patients under their care between April 2013 and March 2018 who had TV. Patient characteristics, the time spent on ventilation, hospital length of stay, discharge destination, and survival data were collected. : Sixty-eight MND patients were initiated on TV over the 5-year period. Eighty-one percent of patients received TV in an emergency setting with more than a third of these undiagnosed at presentation. Patients choosing elective TV were more likely to be male (85%) have a bulbar presentation (54%) and an increased survival of 10 months over the observation period. The mean length of hospital stay post TV was 136 days. Two-thirds of patients were discharged to their own home. : Very few patients living with MND in the UK are currently receiving TV. In those who choose TV, there may be a survival advantage to planning an elective procedure. Despite the long inpatient stay and high care costs involved a majority of patients survived and were discharged to their own home.
运动神经元病（MND）的特征是运动神经元迅速进行性退化，导致肌肉萎缩。死亡率和发病率归因于呼吸肌无力，而通气可能会抵消这种情况。这项观察性研究的目的是量化在英国选择气管切开通气（TV）的MND患者的数量和特征。：邀请英国的长期通气服务机构对其在2013年4月至2018年3月期间护理的接受TV的MND患者进行为期5年的回顾性审核。收集患者特征、通气时间、住院时间、出院目的地和生存数据。：在这5年期间，68例MND患者开始接受TV。81%的患者在紧急情况下接受TV，其中超过三分之一在就诊时未被诊断。选择择期TV的患者更可能为男性（85%），有延髓表现（54%），并且在观察期内存活时间延长10个月。TV后平均住院时间为136天。三分之二的患者出院后回到自己家中。：目前在英国，接受TV的MND患者非常少。在那些选择TV的患者中，计划择期手术可能具有生存优势。尽管住院时间长且护理成本高，但大多数患者存活下来并出院回到自己家中。
