Booth Sara, Johnson Miriam J
Cambridge Breathlessness Intervention Service, Cambridge University Hospitals NHS Foundation Trust, University of Cambridge, Cambridge, UK.
Cicely Saunders Institute, King's College London, London, UK.
Breathe (Sheff). 2019 Sep;15(3):198-215. doi: 10.1183/20734735.0200-2019.
Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services.
People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life.Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe.Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it.Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life.The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention.Many of the interventions are delivered primarily by allied health or nursing professionals.Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care.A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease.
To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness.To outline the evidence base for these interventions with reference to definitive sources.To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.
晚期呼吸系统疾病所带来的症状负担比许多癌症更重，但在对支持性和姑息治疗的需求认识方面，以及在系统性提供此类治疗的基础设施方面，却没有得到同等程度的重视。因此，许多晚期呼吸系统疾病患者（以及与他们关系最密切的人）生活质量很差，因慢性呼吸困难、疲劳及其他症状而丧失能力。他们因长期患病而在社会上孤立无援，且常常陷入经济困境。在过去十年中，人们越来越意识到必须改善对这一群体的护理，并且必须优先进行症状管理。临床指南建议将以人为本的护理，包括根据需要提供支持性和姑息治疗，作为标准医疗实践的一部分。晚期肺病诊所和专门的呼吸困难服务（最初在姑息治疗中开展）正在呼吸医学服务中发展，但提供情况并不一致。本综述涵盖对晚期呼吸系统疾病患者的全面评估、支持护理人员的重要性，以及目前在呼吸困难、疲劳和咳嗽管理方面的最佳实践。它还提出了一些方法，通过与专科姑息治疗和初级护理更好地联络，将以人为本的护理纳入普通呼吸诊所。新出现的证据表明，出色的症状管理可带来更好的临床结果，并减少对紧急医疗服务的不当使用。
晚期呼吸系统疾病患者和严重慢性呼吸困难患者（以及与他们关系最密切的人）生活质量很差。慢性呼吸困难是一种致残症状，而慢性基础上的急性/发作性呼吸困难对经历者和观察者来说都令人恐惧。慢性呼吸困难给患者本人或与患者共同生活的人带来了严重的身体限制和心理社会负担。疲劳和咳嗽是晚期呼吸系统疾病的另外两个主要症状，对生活质量有非常不利的影响。通过主要是非药物的综合干预，所有这些症状的影响在不同程度上都可以得到缓解。许多干预措施主要由专职医疗人员或护理专业人员提供。医生、护士和其他卫生专业人员也需要积极参与，将提高生活质量作为优质医疗护理的一部分。所有治疗晚期呼吸系统疾病患者的临床医生都需要采用以人为本、注重心理的方法。
为专科呼吸临床医生提供实用的临床工具，以帮助改善晚期呼吸系统疾病和慢性呼吸困难患者的生活质量。参考权威资料概述这些干预措施的证据基础。强调在疾病各个阶段对呼吸系统疾病患者进行以人为本护理的重要性。
