Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Arquivos de Neuro-Psiquiatria

Maria Clara Drummond Soares De Moura¹  Hanna Camila Wutzki¹  Mariana Callil Voos¹  Maria Bernadete Dutra Resende¹  Umbertina Conti Reed¹  Renata Hydee Hasue¹ 

关键词: Duchenne muscular dystrophy;    behavior;    quality of life;    motor activity;    distrofia muscular de Duchenne;    comportamento;    qualidade de vida;    atividade motora;   

DOI  :  10.1590/0004-282X20140194

来源: SciELO

【 摘 要 】

ObjectiveThe relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers.MethodThis study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables.ResultsThe occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.

【 授权许可】

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