囊性纤维化基金会立场文件:重新定义 CF 护理模式。

IF 5.4 2区 医学 Q1 RESPIRATORY SYSTEM Journal of Cystic Fibrosis Pub Date : 2024-09-19 DOI:10.1016/j.jcf.2024.08.007
D M Goetz, R F Brown, S S Filigno, S L Bichl, A L Nelson, C A Merlo, R Juel, P Lomas, S E Hempstead, Q Tran, A W Brown, P A Flume
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引用次数: 0

摘要

囊性纤维化患者(pwCF)由囊性纤维化基金会认可的护理中心网络内的跨学科团队提供专业护理。该网络实现了护理模式的标准化、临床护理指南的实施、高效沟通和结果报告。最近的发展对这种护理模式产生了影响。CFTR 调节器疗法的普及改善了许多患者的总体健康状况,但并非所有肺结核患者都能获得这种治疗。COVID-19 大流行导致远程医疗和远程监控的迅速普及,以确保 CF 护理的连续性。护理提供者、儿童肺结核患者和家长护理人员合作,重新评估了当前护理模式的关键方面,并根据不断扩大的需求范围考虑了可能的修改。现有证据被用来评估常规临床实践的组成部分,并确定对护理进行调整的可能性。审查包括确定需要加强监测的患者特征,同时接受以患者为中心的护理,并强调远程医疗和居家保健技术的整合。尽管情况在不断变化,但患者、其支持系统和护理团队之间关系的重要性得到了确认,这是护理模式永恒的基础。护理模式中的共同决策、合作关系以及护理团队共同制定的护理计划为护理模式的最佳调整提供了指导,以支持个人的优先事项和福祉。随着医疗保健事业的发展和贫困儿童年龄的增长,需要进一步开展研究,以了解护理模式对长期健康结果的影响,并确定支持贫困儿童健康长寿的最佳实践。
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Cystic fibrosis foundation position paper: Redefining the CF care model.

Specialized care is provided to people with cystic fibrosis (pwCF) by interdisciplinary teams nested within the CF Foundation's accredited care center network. This network allows for standardization of the care model, implementation of clinical care guidelines, efficient communication, and outcomes reporting. Recent developments have impacted this care model. Increased access to CFTR modulator therapies has improved overall health for many, although not all pwCF. The COVID-19 pandemic resulted in a rapid adoption of telemedicine and remote monitoring to ensure continuity of CF care. A collaboration of care providers, pwCF, and parent caregivers reevaluated key aspects of the current care model and considered potential modifications based on a widening range of needs. Available evidence was used to evaluate components of routine clinical practice and identify potential adaptations to care. The review included identification of patient characteristics warranting intensive monitoring, while embracing patient-centric care, and emphasizing the integration of telemedicine and at-home health technologies. Despite the changing landscape, the importance of the relationship between pwCF, their support system, and the care team was confirmed as a timeless and foundational aspect of the care model. Shared decision making, partnership, and coproduced care plans between pwCF and their CF care teams guide the best adaptations of the care model to support individual priorities and wellbeing. As health care advances and pwCF age, further research is needed to understand the impact of the care model on long-term health outcomes and to identify best practices that support pwCF to live longer healthier lives.

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来源期刊
Journal of Cystic Fibrosis
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.
期刊最新文献
Elexacaftor/tezacaftor/ivacaftor and mental health: A workshop report from the Cystic Fibrosis Foundation's Prioritizing Research in Mental Health working group. Coping and learning to Manage Stress with cystic fibrosis (CALM): A multisite telehealth randomized controlled trial to reduce depression and anxiety symptoms in adults with cystic fibrosis. Bridging the gap: Challenging lung infections and clinical trial development in cystic fibrosis. Impact of elexacaftor/tezacaftor/ivacaftor on utilization of routine therapies in cystic fibrosis: Danish nationwide register study. What does it mean to be "healthy" when taking elexacaftor/tezacaftor/ivacaftor (ETI)? A qualitative study.
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