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.authorLima de Queiroz, Ana Paula
dc.contributor.authorAbensur Athanazio, Rodrigo
dc.contributor.authorKowal Olm, Mary Anne
dc.contributor.authorRubbo, Bruna
dc.contributor.authorReis Casa, Yuri
dc.contributor.authorLucas, Jane
dc.contributor.authorBehan, Laura
dc.date.accessioned2019-11-20T06:07:23Z
dc.date.available2019-11-20T06:07:23Z
dc.date.issued2019-04-29
dc.description.abstractPrimary 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.abstractA 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.description.statusPeer revieweden
dc.description.versionPublished Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.articleide20170358en
dc.identifier.citationQueiroz, 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/e20170358en
dc.identifier.doi10.1590/1806-3713/e20170358en
dc.identifier.eissn1806-3756
dc.identifier.endpage4en
dc.identifier.issn1806-3713
dc.identifier.issued3en
dc.identifier.journaltitleJornal Brasileiro de Pneumologiaen
dc.identifier.startpage1en
dc.identifier.urihttps://hdl.handle.net/10468/9159
dc.identifier.volume45en
dc.language.isoenen
dc.publisherSociedade Brasileira de Pneumologia e Tisiologiaen
dc.relation.urihttp://www.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132019000300300&lng=en&tlng=en
dc.rights© 2019 Sociedade Brasileira de Pneumologia e Tisiologiaen
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/en
dc.subjectQuality of lifeen
dc.subjectKartagener syndromeen
dc.subjectSurveys and questionnairesen
dc.subjectQualidade de vidapt
dc.subjectSíndrome de Kartagenerpt
dc.subjectInquéritos e questionáriospt
dc.titleTranslation of the quality-of-life measure for adults with primary ciliary dyskinesia and its application in patients in Brazilen
dc.title.alternativeTradução do questionário de qualidade de vida para pacientes adultos com discinesia ciliar primária no Brasilpt
dc.typeArticle (peer-reviewed)en
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