Turner Nicola, Faull Christina, Palmer Jonathan, Armstrong Alison, Bedford Jennifer, Turner Martin R, Wilson Eleanor
School of Health Sciences, University of Nottingham, Nottingham NG7 2AH, UK.
LOROS Hospice Centre for Excellence, Leicester LE3 9QE, UK.
Brain Sci. 2024 Aug 16;14(8):821. doi: 10.3390/brainsci14080821.
Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthcare professionals for not recommending this intervention, yet little is known about QoL in this context. This scoping review was conducted to examine the evidence on QoL for those with MND who use TV and family members involved in their care. Using the methodological guidance of the Joanna Briggs Institute, 23 papers were identified for inclusion, and findings were inductively analysed to identify key themes. We found that people living with MND tend to rate QoL post TV more positively than anticipated by healthcare professionals or family members. QoL was found to be related to positive relationships and activities the person could maintain. Feeling able to make a choice and an adequate level of financial resources were also important factors. Family members tended to experience lower QoL, associated with the uncertainty surrounding an emergency procedure and the complexity of subsequently required care. More evidence on QoL from the perspectives of people with MND who use TV is needed to support decision making and inform guidance.
气管造口通气（TV）可延长运动神经元病（MND）患者的生存时间；然而，各国对TV的使用情况不尽相同。医疗保健专业人员不推荐这种干预措施的原因之一是担心预期生活质量（QoL），但在这种情况下对生活质量的了解却很少。本综述旨在研究使用TV的MND患者及其护理家庭成员的生活质量证据。根据乔安娜·布里格斯研究所的方法指南，确定了23篇纳入论文，并对研究结果进行归纳分析以确定关键主题。我们发现，与医疗保健专业人员或家庭成员的预期相比，MND患者倾向于对TV后的生活质量给予更积极的评价。生活质量被发现与患者能够维持的积极人际关系和活动有关。能够做出选择和足够的经济资源也是重要因素。家庭成员的生活质量往往较低，这与紧急手术的不确定性以及随后所需护理的复杂性有关。需要更多来自使用TV的MND患者视角的生活质量证据来支持决策并为指导提供信息。
