Abstract

PFEIFER, Luzia Iara  and  SILVA, Mariléia Araújo da. Assessment of quality of life in children with cystic fibrosis. Rev. NUFEN [online]. 2009, vol.1, n.2, pp. 118-130. ISSN 2175-2591.

The present study had as objective of evaluating the quality of life of children suffering from Cystic Fibrosis (CF) in the state of Pará. In order to get that, it was made a descriptive quantitative research using data collected from the application of the Autoquestionnaire Qualité de Vie Imagé (AUQEI/EQVC). Twenty children participated in the study aged 5 - 12, who suffer from CF and enrolled in the attendance to the Cystic fibrosis program from João of Barros Barreto Hospital. The medium score, from the 20 children, was 51, 9 with a Standard Deviation of 6, 20; 75% of the children had a higer score, that is, up to the reference value (EQVC >48), therefor with a positive quality of life. The aspects that registred the highest scores are related tothe leisure factor and the hospitalization and being far from the family. This study made possible a bigger understanding with the complex and problematic situation where the children affected for an illness live that still does not have cure. The quality of life has been evaluated in diverse groups of patients and with different instruments, but the information still is scarce in the pediatric area, thus the AUQEI/ EQVC is an instrument with characteristics that satisfactorily takes care of to the objective to verify the quality of life in children.

Keywords : Cystic Fibrosis; Quality of Life; Child and reabilitation.

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