Duchenne muscular dystrophy: quality of life among 95 patients evaluated using the Life Satisfaction Index for Adolescents

Arquivos de Neuro-Psiquiatria

Valdecir A. Simon²  Maria Bernardete Dutra Resende²  Margarete A.v.p. Simon¹  Edmar Zanoteli²  Umbertina Conti Reed² 

[1] ,University of São Paulo School of Medicine Department of NeurologySão Paulo SP ,Brazil

关键词: quality of life;    Duchenne muscular dystrophy;    steroid therapy;    questionnaire;    Life Satisfaction Index for Adolescents;    qualidade de vida;    distrofia muscular de Duchenne;    corticoterapia;    questionário;    Life Satisfaction Index for Adolescents;   

DOI  :  10.1590/S0004-282X2011000100005

来源: SciELO

【 摘 要 】

The purpose of this study was to evaluate the quality of life (QoL) of patients with Duchenne muscular dystrophy (DMD) in different stages of the disease, by means of the Life Satisfaction Index for Adolescents (LSI-A). The practicality of this scale was also verified. The LSI-A was applied four times to 95 patients with DMD who were undergoing steroid therapy, at three-month intervals. The patients were divided into four groups according to age. The results from the four applications and the inter and intra-examiner concordance were treated statistically. Comparing the different age groups, patients with DMD did not lose QoL, even with disease progression. We concluded that, in spite of the progressive course of the disease, the QoL in patients with DMD does not get worse. The use of a scale that embraces a great diversity of circumstances in patients' lives, without considering clinical aspects excessively, is a good alternative for assessing the QoL of these patients.

【 授权许可】

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