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
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.
Kartagener syndrome, Quality of life, Surveys and questionnaires
de Queiroz, Ana Paula Lima
c73fd08d-3b0b-42ef-8ad1-36806d87dc89
Athanazio, Rodrigo Abensur
cbdf7819-8b91-4284-89ea-99ff00bb4d31
Olm, Mary Anne Kowal
16cb82d1-e309-4e29-96a0-4e38d15027e5
Rubbo, Bruna
dc31cd48-3d84-41ab-a8b8-351c9914dca4
Casal, Yuri Reis
4c2e6076-ac53-484f-a067-f654e2a7ef3f
Lucas, Jane
5cb3546c-87b2-4e59-af48-402076e25313
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
de Queiroz, Ana Paula Lima
c73fd08d-3b0b-42ef-8ad1-36806d87dc89
Athanazio, Rodrigo Abensur
cbdf7819-8b91-4284-89ea-99ff00bb4d31
Olm, Mary Anne Kowal
16cb82d1-e309-4e29-96a0-4e38d15027e5
Rubbo, Bruna
dc31cd48-3d84-41ab-a8b8-351c9914dca4
Casal, Yuri Reis
4c2e6076-ac53-484f-a067-f654e2a7ef3f
Lucas, Jane
5cb3546c-87b2-4e59-af48-402076e25313
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
de Queiroz, Ana Paula Lima, Athanazio, Rodrigo Abensur, Olm, Mary Anne Kowal, Rubbo, Bruna, Casal, Yuri Reis, Lucas, Jane and Behan, Laura
(2019)
Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil.
Jornal Brasileiro de Pneumologia, 45 (3), [e20170358].
(doi:10.1590/1806-3713/e20170358).
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.
Text
1806-3713-jbpneu-45-03-e20170358
- Version of Record
More information
Accepted/In Press date: 2 May 2018
e-pub ahead of print date: 29 April 2019
Keywords:
Kartagener syndrome, Quality of life, Surveys and questionnaires
Identifiers
Local EPrints ID: 431466
URI: http://eprints.soton.ac.uk/id/eprint/431466
ISSN: 1806-3713
PURE UUID: 5686cbf6-4384-4858-867e-0a87b7ff6cbb
Catalogue record
Date deposited: 05 Jun 2019 16:30
Last modified: 12 Jun 2024 01:48
Export record
Altmetrics
Contributors
Author:
Ana Paula Lima de Queiroz
Author:
Rodrigo Abensur Athanazio
Author:
Mary Anne Kowal Olm
Author:
Yuri Reis Casal
Author:
Laura Behan
Download statistics
Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.
View more statistics
