Respiratory Medicine and Cystic Fibrosis National Reference Center, Cochin Hospital, Assistance Publique Hôpitaux de Paris (AP-HP), Institut Cochin, Inserm U1016, Université Paris-Cité, Paris, France.
Department of Women's and Children's Health, Institute in the Park, Alder Hey Children's Hospital, University of Liverpool, Eaton Road, Liverpool L12 2AP, UK.
J Cyst Fibros. 2024 Mar;23(2):187-202. doi: 10.1016/j.jcf.2024.01.005. Epub 2024 Jan 16.
This is the third in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on recognising and addressing CF health issues. The guidance was produced with wide stakeholder engagement, including people from the CF community, using an evidence-based framework. Authors contributed sections, and summary statements which were reviewed by a Delphi consultation. Monitoring and treating airway infection, inflammation and pulmonary exacerbations remains important, despite the widespread availability of CFTR modulators and their accompanying health improvements. Extrapulmonary CF-specific health issues persist, such as diabetes, liver disease, bone disease, stones and other renal issues, and intestinal obstruction. These health issues require multidisciplinary care with input from the relevant specialists. Cancer is more common in people with CF compared to the general population, and requires regular screening. The CF life journey requires mental and emotional adaptation to psychosocial and physical challenges, with support from the CF team and the CF psychologist. This is particularly important when life gets challenging, with disease progression requiring increased treatments, breathing support and potentially transplantation. Planning for end of life remains a necessary aspect of care and should be discussed openly, honestly, with sensitivity and compassion for the person with CF and their family. CF teams should proactively recognise and address CF-specific health issues, and support mental and emotional wellbeing while accompanying people with CF and their families on their life journey.
这是更新欧洲囊性纤维化学会(ECFS)囊性纤维化护理标准的四篇论文中的第三篇。本文侧重于识别和解决 CF 健康问题。该指南是在广泛的利益相关者参与下制定的,包括 CF 社区的人员,并使用了基于证据的框架。作者撰写了各部分内容,以及总结陈述,这些内容都经过了 Delphi 咨询的审查。尽管 CFTR 调节剂广泛可用并带来了相应的健康改善,但监测和治疗气道感染、炎症和肺部恶化仍然很重要。除了肺部问题外,CF 特有的健康问题仍然存在,如糖尿病、肝病、骨病、结石和其他肾脏问题以及肠梗阻。这些健康问题需要多学科的护理,并需要相关专家的参与。与普通人群相比,CF 患者的癌症更为常见,需要定期筛查。CF 的人生旅程需要适应心理和身体上的挑战,需要 CF 团队和 CF 心理学家的支持。当病情进展需要增加治疗、呼吸支持和潜在的移植时,这一点尤其重要。规划生命末期仍然是护理的必要方面,应该公开、诚实地进行讨论,对 CF 患者及其家人表现出敏感性和同情心。CF 团队应主动识别和解决 CF 特定的健康问题,并在 CF 患者及其家人的人生旅途中支持他们的心理健康和幸福感。