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儿童至成人囊性纤维化护理过渡模式的全球视角:目前已取得哪些进展?

A Global Perspective on Transition Models for Pediatric to Adult Cystic Fibrosis Care: What Has Been Made So Far?

作者信息

Poamaneagra Silvia Cristina, Plesca Doina-Anca, Tataranu Elena, Marginean Otilia, Nemtoi Alexandru, Mihai Catalina, Gilca-Blanariu Georgiana-Emmanuela, Andronic Cristiana-Mihaela, Anchidin-Norocel Liliana, Diaconescu Smaranda

机构信息

Doctoral School, "George Emil Palade" University of Medicine, Pharmacy, Science and Technology, 540139 Targu Mures, Romania.

Faculty of Medicine, "Carol Davila" University of Medicine and Pharmacy, 050474 Bucharest, Romania.

出版信息

J Clin Med. 2024 Dec 6;13(23):7428. doi: 10.3390/jcm13237428.

DOI:10.3390/jcm13237428
PMID:39685886
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11642410/
Abstract

Interest in the transition of care for cystic fibrosis (CF) patients has grown significantly over time, driven by advancements in treatment that have extended life expectancy. As more CF patients survive into adulthood, the need for structured transition strategies has become a priority for healthcare systems worldwide. Transition programs for CF differ globally, reflecting varying resources and healthcare systems. In North America, the US CF Foundation has fostered adult care since the 1990s, with accreditation standards mandating adult programs and structured transition guidelines, exemplified by the CF RISE program for gradual responsibility shifts. Canada integrates US-inspired models, emphasizing national advocacy and outcomes evaluation. In Europe, approaches varies widely; the UK leads with structured programs like the Liverpool model and robust registry support, while France and Germany adopt multidisciplinary methods. In Australia and New Zealand, youth-centered policies prioritize early planning and access via telemedicine. In Asia, where CF is rare, transitions are less formalized, with some progress in countries like Japan and Turkey, though resource gaps and limited data tracking remain significant challenges. Despite varied approaches across countries, common barriers like resource limitations and psychological readiness continue to challenge successful transitions. Highlighting the importance of centralized, well-coordinated transition programs, recent initiatives have focused on the implementation of national and international CF registries to enhance health outcomes and quality of life. This narrative review provides a global perspective on transition strategies developed across various healthcare systems for CF patients, identifying best practices, common challenges, and outcomes related to the continuity of care.

摘要

随着治疗手段的进步延长了囊性纤维化(CF)患者的预期寿命,对其护理过渡的关注在一段时间内显著增加。随着越来越多的CF患者存活至成年,制定结构化的过渡策略已成为全球医疗系统的首要任务。CF的过渡项目在全球各不相同,反映了资源和医疗系统的差异。在北美,自20世纪90年代以来,美国CF基金会一直致力于成人护理,其认证标准要求设立成人项目和结构化的过渡指南,以CF RISE项目为例,该项目旨在逐步转移责任。加拿大整合了受美国启发的模式,强调全国性宣传和结果评估。在欧洲,方法差异很大;英国以利物浦模式等结构化项目和强大的登记系统支持领先,而法国和德国则采用多学科方法。在澳大利亚和新西兰,以青年为中心的政策将早期规划和通过远程医疗获得服务作为优先事项。在亚洲,CF较为罕见,过渡不太正规,日本和土耳其等国家取得了一些进展,但资源差距和有限的数据跟踪仍然是重大挑战。尽管各国方法各异,但资源限制和心理准备等常见障碍仍继续对成功过渡构成挑战。近期的举措强调了集中、协调良好的过渡项目的重要性,重点是实施国家和国际CF登记系统,以改善健康结果和生活质量。这篇叙述性综述从全球视角介绍了为CF患者在不同医疗系统中制定的过渡策略,确定了与持续护理相关的最佳实践、常见挑战和结果。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c816/11642410/be008c8825d1/jcm-13-07428-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c816/11642410/be008c8825d1/jcm-13-07428-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c816/11642410/be008c8825d1/jcm-13-07428-g001.jpg

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本文引用的文献

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2
The arc of discovery, from the description of cystic fibrosis to effective treatments.从囊性纤维化的描述到有效治疗方法的探索历程。
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J Cyst Fibros. 2024 Nov;23(6):1045-1054. doi: 10.1016/j.jcf.2024.09.011. Epub 2024 Sep 25.
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Cystic Fibrosis: A Journey through Time and Hope.囊性纤维化:穿越时间的希望之旅。
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Exploring the complexity of cystic fibrosis (CF) and psychosocial wellbeing in the 2020s: Current and future challenges.探索2020年代囊性纤维化(CF)的复杂性与心理社会福祉:当前及未来挑战
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