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Evaluation of the quality of life of children with Duchenne’s progressive muscular dystrophy
INTRODUCTION. 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).
AIM. To evaluate the QoL in children with DMD and their caregivers, identifying the most prominent QoL domains according to their perception.
PATIENTS AND 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 Qualité de vie Enfant Imagé) questionnaire and AUQEI qualitative were used to collect the data.