Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

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dc.contributorSistema FMUSP-HC: Faculdade de Medicina da Universidade de São Paulo (FMUSP) e Hospital das Clínicas da FMUSP
dc.contributor.authorMOURA, Maria Clara Drummond Soares de
dc.contributor.authorWUTZKI, Hanna Camila
dc.contributor.authorVOOS, Mariana Callil
dc.contributor.authorRESENDE, Maria Bernadete Dutra
dc.contributor.authorREED, Umbertina Conti
dc.contributor.authorHASUE, Renata Hydee
dc.date.accessioned2015-07-01T20:28:33Z
dc.date.available2015-07-01T20:28:33Z
dc.date.issued2015
dc.description.abstractObjective: The relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. Method: This study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualite de vie Enfant Image. Spearman correlations and linear regressions were run to investigate relationships between the variables. Results: The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers' burden was related to lower caregivers' QOL and to higher patients' ages.
dc.description.abstractObjetivo: A relação entre qualidade de vida e função motora de pacientes com distrofia muscular de Duchenne (DMD) e sobrecarga e qualidade de vida (QV) dos cuidadores não está clara na literatura. Esse estudo investigou possíveis relações entre dependência funcional/ QV de pacientes e sobrecarga/QV dos cuidadores em 35 meninos (6-17 anos) com DMD e respectivos cuidadores (acima de 21 anos). Método: Cada cuidador respondeu ao questionário de QV da Organização Mundial de Saúde e de sobrecarga de Zarit e o paciente foi avaliado com a medida de função motora e o Autoquestionnaire Qualité de vie Enfant Imagé. Correlações de Spearman e regressões lineares investigaram possíveis relações entre as variáveis. Resultados: A ocorrência de menor QV e maior sobrecarga entre cuidadores foi evidenciada, enquanto a dependência funcional dos pacientes não foi considerada fator determinante. Conclusão: Cuidadores com maior sobrecarga apresentaram menor QV relacionada à maior idade dos pacientes
dc.description.indexMEDLINE
dc.identifier.citationARQUIVOS DE NEURO-PSIQUIATRIA, v.73, n.1, p.52-57, 2015
dc.identifier.doi10.1590/0004-282X20140194
dc.identifier.eissn1678-4227
dc.identifier.issn0004-282X
dc.identifier.urihttps://observatorio.fm.usp.br/handle/OPI/9388
dc.language.isoeng
dc.publisherASSOC ARQUIVOS NEURO- PSIQUIATRIA
dc.relation.ispartofArquivos de Neuro-Psiquiatria
dc.rightsopenAccess
dc.rights.holderCopyright ASSOC ARQUIVOS NEURO- PSIQUIATRIA
dc.subjectDuchenne muscular dystrophy
dc.subjectbehavior
dc.subjectquality of life
dc.subjectmotor activity
dc.subjectdistrofia muscular de Duchenne
dc.subjectcomportamento
dc.subjectqualidade de vida
dc.subjectatividade motora
dc.subject.otherfunction measure scale
dc.subject.otherportuguese version
dc.subject.othercerebral-palsy
dc.subject.otherwhoqol-bref
dc.subject.otherchildren
dc.subject.otherhealth
dc.subject.otherreliability
dc.subject.otherdisability
dc.subject.otherfamilies
dc.subject.otherparents
dc.subject.wosNeurosciences
dc.subject.wosPsychiatry
dc.titleIs functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?
dc.title.alternativeA dependência funcional de pacientes com distrofia muscular de Duchenne é fator determinante na qualidade de vida e na sobrecarga de seus cuidadores?
dc.typearticle
dc.type.categoryoriginal article
dc.type.versionpublishedVersion
dspace.entity.typePublication
hcfmusp.citation.scopus24
hcfmusp.contributor.author-fmusphcMARIA CLARA DRUMMOND SOARES DE MOURA
hcfmusp.contributor.author-fmusphcHANNA CAMILA WUTZKI
hcfmusp.contributor.author-fmusphcMARIANA CALLIL VOOS
hcfmusp.contributor.author-fmusphcMARIA BERNADETE DUTRA DE RESENDE
hcfmusp.contributor.author-fmusphcUMBERTINA CONTI REED
hcfmusp.contributor.author-fmusphcRENATA HYDEE HASUE
hcfmusp.description.beginpage52
hcfmusp.description.endpage57
hcfmusp.description.issue1
hcfmusp.description.volume73
hcfmusp.origemWOS
hcfmusp.origem.pubmed25608128
hcfmusp.origem.scieloSCIELO:S0004-282X2015000100052
hcfmusp.origem.scopus2-s2.0-84921761327
hcfmusp.origem.wosWOS:000348280600011
hcfmusp.publisher.citySAO PAULO SP
hcfmusp.publisher.countryBRAZIL
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