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

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

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.

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Bibliographic Details
Main Authors: Queiroz,Ana Paula Lima de, Athanazio,Rodrigo Abensur, Olm,Mary Anne Kowal, Rubbo,Bruna, Casal,Yuri Reis, Lucas,Jane, Behan,Laura
Format: Digital revista
Language:English
Published: Sociedade Brasileira de Pneumologia e Tisiologia 2019
Online Access:http://old.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132019000300300
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Summary: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.

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