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原发性纤毛运动障碍成人生活质量测量表的翻译及其在巴西患者中的应用。

Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil.

机构信息

. Escola Bahiana de Medicina e Saúde Pública, Salvador (BA) Brasil.

. Divisão de Pneumologia, Instituto do Coração - InCor - Hospital das Clínicas, Faculdade de Medicina, Universidade de São Paulo, São Paulo (SP) Brasil.

出版信息

J Bras Pneumol. 2019 Apr 29;45(3):e20170358. doi: 10.1590/1806-3713/e20170358.

DOI:10.1590/1806-3713/e20170358
PMID:31038545
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6715036/
Abstract

Primary ciliary dyskinesia (PCD) is a genetic disorder that is typically inherited in an autosomal recessive manner. It is clinically characterized by recurrent respiratory infections. However, its repercussions for patient quality of life should not be overlooked. Studies have shown that PCD has a significant impact on the lives of patients, although there are as yet no PCD-specific markers of quality of life. To address that problem, researchers in the United Kingdom developed a quality-of-life questionnaire for patients with PCD. The present communication focuses on the process of translating that questionnaire into Brazilian Portuguese, through a partnership between researchers in Brazil and those in the United Kingdom, as well as its subsequent application in patients in Brazil.

摘要

原发性纤毛运动障碍(PCD)是一种遗传性疾病,通常以常染色体隐性方式遗传。其临床特征为反复呼吸道感染。然而,不应忽视其对患者生活质量的影响。研究表明,PCD 对患者的生活有重大影响,尽管目前尚无针对 PCD 的生活质量特异性标志物。为了解决这个问题,英国的研究人员为 PCD 患者开发了一种生活质量问卷。本通讯重点介绍了通过巴西和英国的研究人员之间的合作,将该问卷翻译成巴西葡萄牙语的过程,以及随后在巴西患者中的应用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e42/6715036/8d984de8c775/1806-3713-jbpneu-45-03-e20170358-gf2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e42/6715036/6235ec24cfbf/1806-3713-jbpneu-45-03-e20170358-gf1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e42/6715036/8d984de8c775/1806-3713-jbpneu-45-03-e20170358-gf2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e42/6715036/6235ec24cfbf/1806-3713-jbpneu-45-03-e20170358-gf1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e42/6715036/8d984de8c775/1806-3713-jbpneu-45-03-e20170358-gf2.jpg

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本文引用的文献

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The patient's experience of primary ciliary dyskinesia: a systematic review.原发性纤毛运动障碍患者的经历:一项系统综述
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