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- W2508839375 abstract "The quality of life (QOL) of children with Duchenne muscular dystrophy (DMD) is still controversial. Some studies have shown that it is reduced among children with DMD. Others have found no differences between the QOL of children with DMD and healthy children. The relationship between functional dependence and quality of life in patients with DMD and between burden and quality of life in caregivers of patients with DMD is not clear in literature. The present study investigated possible relationships between functional dependence and quality of life in patients with Duchenne muscular dystrophy and between quality of life and burden in their caregivers. This study included 35 boys (6–17 yrs) and respective caregivers (above 21 yrs). Caregivers answered to quality of life (World Health Organization Quality of Life) and burden (Zarit Burden Interview) questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations tests and linear regressions were run to investigate the relationships between the variables. The occurrence of lower quality of life and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. Higher burden of caregivers was related to a lower quality of life on caregivers (r = −0.46) and to higher patients' ages (r = −0.73). The present study evidences the occurrence of lower QOL and higher burden in caregivers of patients with DMD. It also clarifies that the origin of the burden is related specifically to the time caring for the children, and it is not correlated to the loss of functional independence of the patients. An intervention based on the whole family and not only on the child with DMD should be considered. Besides, when the child is diagnosed with DMD, the parents should be oriented to share the responsibilities of caring for the child, in order to increase their QOL and reduce their burden." @default.
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- W2508839375 date "2015-10-01" @default.
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- W2508839375 title "Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?" @default.
- W2508839375 doi "https://doi.org/10.1016/j.nmd.2015.06.068" @default.
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