Turner Nicola, Palmer Jonathan, Faull Christina, Davidson Scott, Turner Martin R, Wilson Eleanor
School of Health Sciences, University of Nottingham, Nottingham, UK.
Department of Thoracic Medicine, University Hospitals Plymouth NHS Trust, Plymouth, UK.
Amyotroph Lateral Scler Frontotemporal Degener. 2025 Apr 22:1-8. doi: 10.1080/21678421.2025.2495014.
This qualitative study aimed to increase understanding of how healthcare practitioners (HCPs) perceive quality of life for people with ALS who use tracheostomy ventilation (TV) and the extent to which such views inform discussions regarding future treatment and care. A thematic analysis was applied to data derived from online semi-structured interviews with a professionally diverse group of 24 HCPs with experience of supporting people with ALS to use TV. Four main themes relating to TV use emerged: i) ; ii) ; iii) ; iv) HCPs acknowledged that TV has the potential to extend life but were concerned with prolonging a serious decline in physical and cognitive functioning. HCPs tried to identify the 'tipping point' between quantity and quality of life for the individual and their family, taking into account the likelihood of a higher burden of care. HCPs drew on prior experience to assess anticipated quality of life, yet most HCPs in the UK have limited experience of TV for this group. HCPs also drew on principles of person-centered care, patient autonomy and value for money to guide their approach to discussing TV. HCP experience of positive outcomes of TV can foster a more proactive approach to initiating conversations about its potential use. Sharing best practice and improving guidance for HCPs may support early and on-going future care planning and enable people with ALS to make choices which are informed and in their best interests.
这项定性研究旨在增进对医疗从业者（HCPs）如何看待使用气管造口通气（TV）的肌萎缩侧索硬化症（ALS）患者的生活质量，以及这些观点在多大程度上为有关未来治疗和护理的讨论提供信息的理解。对来自与24名具有支持ALS患者使用TV经验的不同专业背景的HCPs进行的在线半结构化访谈所获得的数据进行了主题分析。出现了与TV使用相关的四个主要主题：i）；ii）；iii）；iv）HCPs承认TV有可能延长生命，但担心会延长身体和认知功能的严重衰退。HCPs试图确定个体及其家庭在生活质量的数量和质量之间的“临界点”，同时考虑到护理负担加重的可能性。HCPs借鉴以往经验来评估预期的生活质量，但英国的大多数HCPs对该群体使用TV的经验有限。HCPs还借鉴了以患者为中心的护理、患者自主权和性价比原则来指导他们讨论TV的方法。HCPs对TV积极结果的经验可以促进更积极主动地展开关于其潜在用途的对话。分享最佳实践并改进对HCPs的指导可能有助于早期和持续的未来护理规划，并使ALS患者能够做出明智且符合其最佳利益的选择。
