关注倒数第二步：在囊性纤维化诊所增加早期肺移植讨论，为患者转诊做准备。 - Suppr

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Focusing on the penultimate step: increasing early lung transplant discussion in cystic fibrosis clinic to prepare patients for referral.

作者信息

Bartley Bethany L, St John Anita, Neuringer Isabel P, Cummings Brian M, Yonker Lael M

机构信息

Pediatric Pulmonology, Massachusetts General Hospital, Boston, Massachusetts, USA.

Pulmonology, Massachusetts General Hospital, Boston, Massachusetts, USA.

出版信息

BMJ Open Qual. 2020 Oct;9(4). doi: 10.1136/bmjoq-2020-001031.

DOI:10.1136/bmjoq-2020-001031

PMID:33028657

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7542621/

Abstract

摘要

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Focusing on the penultimate step: increasing early lung transplant discussion in cystic fibrosis clinic to prepare patients for referral.关注倒数第二步：在囊性纤维化诊所增加早期肺移植讨论，为患者转诊做准备。

BMJ Open Qual. 2020 Oct;9(4). doi: 10.1136/bmjoq-2020-001031.

Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences.解决成人囊性纤维化肺移植问题：对患者观点和经验的定性分析。

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Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines.肺移植转诊推荐：囊性纤维化基金会共识指南。

J Cyst Fibros. 2019 May;18(3):321-333. doi: 10.1016/j.jcf.2019.03.002. Epub 2019 Mar 27.

Development of a decision aid for adult cystic fibrosis patients considering referral for lung transplantation.为考虑转诊进行肺移植的成年囊性纤维化患者开发一种决策辅助工具。

Prog Transplant. 2010 Mar;20(1):81-7. doi: 10.1177/152692481002000113.

Lung Transplantation for Cystic Fibrosis.囊性纤维化的肺移植

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Patient factors associated with lung transplant referral and waitlist for patients with cystic fibrosis and pulmonary fibrosis.与囊性纤维化和肺纤维化患者的肺移植转诊及等待名单相关的患者因素。

J Heart Lung Transplant. 2017 Mar;36(3):264-271. doi: 10.1016/j.healun.2016.08.016. Epub 2016 Aug 21.

Referral for lung transplantation: experience of a Birmingham Adult Cystic Fibrosis Centre between 1987 and 1994.肺移植转诊：1987年至1994年间伯明翰成人囊性纤维化中心的经验

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Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists.肺移植转诊实践模式：囊性纤维化医师和普通肺科医师的调查。

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本文引用的文献

Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists.肺移植转诊实践模式：囊性纤维化医师和普通肺科医师的调查。

BMC Pulm Med. 2020 Mar 4;20(1):58. doi: 10.1186/s12890-020-1067-4.

Elexacaftor-Tezacaftor-Ivacaftor for Cystic Fibrosis with a Single Phe508del Allele.依伐卡托与泰比卡托和艾克卡托三联复方药物治疗携带单个 F508del 突变的囊性纤维化

N Engl J Med. 2019 Nov 7;381(19):1809-1819. doi: 10.1056/NEJMoa1908639. Epub 2019 Oct 31.

Disease progression in patients with cystic fibrosis treated with ivacaftor: Data from national US and UK registries.依伐卡托治疗囊性纤维化患者的疾病进展：来自美国和英国国家注册中心的数据。

J Cyst Fibros. 2020 Jan;19(1):68-79. doi: 10.1016/j.jcf.2019.05.015. Epub 2019 Jun 10.

J Cyst Fibros. 2019 May;18(3):416-419. doi: 10.1016/j.jcf.2019.04.007. Epub 2019 Apr 17.

Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines.肺移植转诊推荐：囊性纤维化基金会共识指南。

J Cyst Fibros. 2019 May;18(3):321-333. doi: 10.1016/j.jcf.2019.03.002. Epub 2019 Mar 27.

Tezacaftor-Ivacaftor in Patients with Cystic Fibrosis Homozygous for Phe508del.Tezacaftor-Ivacaftor 治疗纯合子 Phe508del 突变型囊性纤维化患者的疗效

N Engl J Med. 2017 Nov 23;377(21):2013-2023. doi: 10.1056/NEJMoa1709846. Epub 2017 Nov 3.

Heterogeneity in Survival in Adult Patients With Cystic Fibrosis With FEV < 30% of Predicted in the United States.美国预测FEV<30%的成年囊性纤维化患者生存的异质性

Chest. 2017 Jun;151(6):1320-1328. doi: 10.1016/j.chest.2017.01.019. Epub 2017 Jan 20.

Cystic fibrosis physicians' perspectives on the timing of referral for lung transplant evaluation: a survey of physicians in the United States.囊性纤维化医生对肺移植评估转诊时机的看法：美国医生的一项调查

BMC Pulm Med. 2017 Jan 19;17(1):21. doi: 10.1186/s12890-017-0367-9.

Long-term safety and efficacy of ivacaftor in patients with cystic fibrosis who have the Gly551Asp-CFTR mutation: a phase 3, open-label extension study (PERSIST).依伐卡托在 Gly551Asp-CFTR 突变的囊性纤维化患者中的长期安全性和疗效：一项 3 期、开放标签扩展研究（PERSIST）。

Lancet Respir Med. 2014 Nov;2(11):902-910. doi: 10.1016/S2213-2600(14)70218-8. Epub 2014 Oct 9.

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