[Evaluation of the quality of life of children with Duchenne's progressive muscular dystrophy].
BACKGROUND
The Duchenne's progressive muscular dystrophy (DMD) is a genetic disease that happens in people from the male sex, characterized for the progressive muscular weakness that takes to the lost of gait between 8-12 years old and to death usually in the end of the adolescence. At present, there is no effective treatment for disease, the efforts had been taken to retard the progression of disease and improve the quality of life (QoL).


OBJECTIVE
To evaluate the QoL in children with DMD and their caregivers, identifying the most prominent QoL domains according to their perception.


METHODS
Fourteen children diagnosed with DMD and their caregivers were enrolled in this descriptive study, with qualitative and quantitative analysis. The mean age was 9.9 years. The AUQEI (Autoquestionnaire Qualite de vie Enfant Image) questionnaire and AUQEI qualitative were used to collect the data.


RESULTS
The results showed a good QoL perception among DMD children and a strong agreement between children and their caregivers especially regarding to the happiness requirements question. The most import life domains identified were physical function, family and leisure activity.


CONCLUSIONS
These findings allow us to understand the QoL perception in a group of children with DMD, and may contribute to improvement of their QoL preserving their natural childhood development.
Longo-Araujo de Melo
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Centro de Rehabilitación Sarah Fortaleza, Fortaleza, Brazil. egmarlongo@hotmail.com
Moreno-Valdes
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MT
D000293:Adolescent; D017028:Caregivers / Q000523:psychology; D002648:Child; D019988:Children with Disabilities; D018450:Disease Progression; D005260:Female; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000503:physiopathology / Q000523:psychology; D011788:Quality of Life; D011795:Surveys and Questionnaires