Brazilian Journal of Pulmonology

ISSN (on-line): 1806-3756 | ISSN (printed): 1806-3713

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

Tradução do questionário de qualidade de vida para pacientes adultos com discinesia ciliar primária no Brasil

Ana Paula Lima de Queiroz1,a, Rodrigo Abensur Athanazio2,b, Mary Anne Kowal Olm3,c, Bruna Rubbo4,5,d, Yuri Reis Casal1,e, Jane Lucas4,5,f, Laura Behan4,5,6,g

J Bras Pneumol.2019;45(3):e20170358-e20170358

Abstract PDF PT PDF EN Portuguese Text Appendix

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.

 


Keywords: Quality of life; Kartagener syndrome; Surveys and questionnaires.

 


 

 


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