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

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...

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Autores principales: de Queiroz, Ana Paula Lima, Athanazio, Rodrigo Abensur, Olm, Mary Anne Kowal, Rubbo, Bruna, Casal, Yuri Reis, Lucas, Jane, Behan, Laura
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Sociedade Brasileira de Pneumologia e Tisiologia 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715036/
https://www.ncbi.nlm.nih.gov/pubmed/31038545
http://dx.doi.org/10.1590/1806-3713/e20170358
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author de Queiroz, Ana Paula Lima
Athanazio, Rodrigo Abensur
Olm, Mary Anne Kowal
Rubbo, Bruna
Casal, Yuri Reis
Lucas, Jane
Behan, Laura
author_facet de Queiroz, Ana Paula Lima
Athanazio, Rodrigo Abensur
Olm, Mary Anne Kowal
Rubbo, Bruna
Casal, Yuri Reis
Lucas, Jane
Behan, Laura
author_sort de Queiroz, Ana Paula Lima
collection PubMed
description 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.
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spelling pubmed-67150362019-09-17 Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil de Queiroz, Ana Paula Lima Athanazio, Rodrigo Abensur Olm, Mary Anne Kowal Rubbo, Bruna Casal, Yuri Reis Lucas, Jane Behan, Laura J Bras Pneumol Brief Communication 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. Sociedade Brasileira de Pneumologia e Tisiologia 2019 /pmc/articles/PMC6715036/ /pubmed/31038545 http://dx.doi.org/10.1590/1806-3713/e20170358 Text en © 2019 Sociedade Brasileira de Pneumologia e Tisiologia https://creativecommons.org/licenses/by-nc/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License
spellingShingle Brief Communication
de Queiroz, Ana Paula Lima
Athanazio, Rodrigo Abensur
Olm, Mary Anne Kowal
Rubbo, Bruna
Casal, Yuri Reis
Lucas, Jane
Behan, Laura
Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title_full Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title_fullStr Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title_full_unstemmed Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title_short Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil
title_sort translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in brazil
topic Brief Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715036/
https://www.ncbi.nlm.nih.gov/pubmed/31038545
http://dx.doi.org/10.1590/1806-3713/e20170358
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