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

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dc.contributor.author Lima de Queiroz, Ana Paula
dc.contributor.author Abensur Athanazio, Rodrigo
dc.contributor.author Kowal Olm, Mary Anne
dc.contributor.author Rubbo, Bruna
dc.contributor.author Reis Casa, Yuri
dc.contributor.author Lucas, Jane
dc.contributor.author Behan, Laura
dc.date.accessioned 2019-11-20T06:07:23Z
dc.date.available 2019-11-20T06:07:23Z
dc.date.issued 2019-04-29
dc.identifier.citation Queiroz, A.P.L.D., Athanazio, R.A., Olm, M.A.K., Rubbo, B., Casal, Y.R., Lucas, J. and Behan, L., 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 en
dc.identifier.volume 45 en
dc.identifier.issued 3 en
dc.identifier.startpage 1 en
dc.identifier.endpage 4 en
dc.identifier.issn 1806-3713
dc.identifier.uri http://hdl.handle.net/10468/9159
dc.identifier.doi 10.1590/1806-3713/e20170358 en
dc.description.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. en
dc.description.abstract A discinesia ciliar primária (DCP) é uma doença genética de origem comumente autossômica recessiva. Caracteriza-se clinicamente por infecções respiratórias de repetição; porém, a repercussão na qualidade de vida desses pacientes deve ser levada em consideração. Estudos têm demonstrado um importante impacto da doença nesse quesito, mas ainda faltam marcadores de qualidade de vida específicos para DCP. Nesse sentido, foi desenvolvido o questionário de qualidade de vida em pacientes com DCP. O presente comunicado versa sobre o processo de tradução do questionário desenvolvido no Reino Unido para o português falado no Brasil através de uma parceria entre pesquisadores do Brasil e Reino Unido e sua posterior aplicação a pacientes brasileiros. pt
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Sociedade Brasileira de Pneumologia e Tisiologia en
dc.relation.uri http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132019000300300&lng=en&tlng=en
dc.rights © 2019 Sociedade Brasileira de Pneumologia e Tisiologia en
dc.rights.uri http://creativecommons.org/licenses/by-nc/4.0/ en
dc.subject Quality of life en
dc.subject Kartagener syndrome en
dc.subject Surveys and questionnaires en
dc.subject Qualidade de vida pt
dc.subject Síndrome de Kartagener pt
dc.subject Inquéritos e questionários pt
dc.title Translation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazil en
dc.title.alternative Tradução do questionário de qualidade de vida para pacientes adultos com discinesia ciliar primária no Brasil pt
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Laura Behan, School of Applied Psychology, University College Cork, Cork, Ireland. +353-21-490-3000 en
dc.internal.availability Full text available en
dc.description.version Published Version en
dc.description.status Peer reviewed en
dc.identifier.journaltitle Jornal Brasileiro de Pneumologia en
dc.identifier.articleid e20170358 en
dc.identifier.eissn 1806-3756


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