Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team.

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM Journal of Cystic Fibrosis Pub Date : 2024-09-24 DOI:10.1016/j.jcf.2024.09.011

Rebekah F Brown, Charlotte T Close, Molly G Mailes, Luis J Gonzalez, Danielle M Goetz, Stephanie S Filigno, Rebecca Preslar, Quynh T Tran, Sarah E Hempstead, Paula Lomas, A Whitney Brown, Patrick A Flume

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Abstract

Interdisciplinary teams care for people with cystic fibrosis (pwCF) at specialized treatment centers. These teams have laid the foundation for the cystic fibrosis (CF) care model responsible for gains in health outcomes and quality of life within the CF community. However, the landscape of CF care is transforming, invigorated by new technologies, accessibility of cystic fibrosis transmembrane conductance regulator (CFTR) therapies, and increased utilization of telemedicine. In light of these advances, it is appropriate to re-evaluate the CF care team structure. This position paper offers guidance for the structure of a CF care center designed to meet the evolving needs of the CF community. Fundamental to the proposed center structure is recognition of pwCF and their families as integral members of their care teams, underpinning the necessity for shared decision making, awareness of social determinants of health, and active partnership between all healthcare professionals involved in the care of pwCF.

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囊性纤维化基金会立场文件：重新定义囊性纤维化护理团队。

跨学科团队在专业治疗中心为囊性纤维化患者（pwCF）提供护理。这些团队为囊性纤维化（CF）治疗模式奠定了基础，使囊性纤维化患者的健康状况和生活质量得到改善。然而，在新技术、囊性纤维化跨膜传导调节器（CFTR）疗法的可及性以及远程医疗利用率提高的推动下，CF 护理的格局正在发生变化。鉴于这些进步，重新评估 CF 护理团队结构是恰当的。本立场文件为 CF 护理中心的结构提供指导，旨在满足 CF 社区不断发展的需求。所建议的中心结构的基础是承认患者及其家属是其护理团队中不可或缺的成员，并强调共同决策的必要性、对健康的社会决定因素的认识以及参与患者护理的所有医疗保健专业人员之间的积极合作。

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来源期刊

Journal of Cystic Fibrosis 医学-呼吸系统

CiteScore

10.10

自引率

13.50%

发文量

1361

审稿时长

50 days

期刊介绍： The Journal of Cystic Fibrosis is the official journal of the European Cystic Fibrosis Society. The journal is devoted to promoting the research and treatment of cystic fibrosis. To this end the journal publishes original scientific articles, editorials, case reports, short communications and other information relevant to cystic fibrosis. The journal also publishes news and articles concerning the activities and policies of the ECFS as well as those of other societies related the ECFS.