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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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Sociedade Brasileira de Pneumologia e Tisiologia
2019
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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. |
format | Online Article Text |
id | pubmed-6715036 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Sociedade Brasileira de Pneumologia e Tisiologia |
record_format | MEDLINE/PubMed |
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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