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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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Detalles Bibliográficos
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
Descripción
Sumario: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.