نبذة مختصرة : RESUMOObjetivo: avaliar a qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes com fibrose cística. Método: trata-se de um estudo quantitativo e transversal, realizado com crianças e adolescentes. Coletaram-se os dados no ambulatório semanalmente com o instrumento DISABKIDS® na perspectiva dos indivíduos (Self) e dos seus pais ou cuidadores (Proxy). Realizou-se a análise estatística por técnicas descritivas no software SPSS 20, sendo construídas tabelas de frequências. Resultados: constituiu-se a amostra por 11 sujeitos. Registrou-se que a maioria (63,6%) dos acompanhantes era de mães com idade média de 41 anos. Apontaram-se, na dimensão impacto, pela Self, uma média de 66,4 e, na Proxy, de 69,5; entretanto, na dimensão tratamento, pela versão Self, obteve-se uma média de 72,4 e, pela Proxy, de 66,9. Classificou-se a maioria dos pacientes com boa condição clínica (45,4%) de acordo com o escore de Shwachman-Kulczyki. Conclusão: conclui-se que as crianças e adolescentes percebem uma melhor QVRS quanto ao tratamento e uma pior QVRS quanto ao impacto da doença, quando comparados aos seus pais/cuidadores. Descritores: Fibrose Cística; Doença Crônica; Qualidade de Vida; Atenção à Saúde; Criança; Adolescente.ABSTRACT Objective: to evaluate the health-related quality of life (HRQoL) of children and adolescents with cystic fibrosis. Method: this is a quantitative and cross-sectional study with children and adolescents. Data was collected in the outpatient clinic weekly with the DISABKIDS® instrument from the perspective of individuals (Self) and their parents or caregivers (Proxy). Statistical analysis was performed using descriptive techniques in SPSS 20 software, and frequency tables were constructed. Results: the sample was constituted by 11 subjects. It was recorded that the majority (63.6%) of the companions were mothers with a mean age of 41 years. In the Impact dimension, Self showed an average of 66.4 and, in Proxy, 69.5; however, in the treatment dimension, by the Self version, we obtained an ...
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