Portal de Periódicos da CAPES

The quality of life in boys with Duchenne muscular dystrophy

2016; Elsevier BV; Volume: 26; Issue: 7 Linguagem: Inglês

10.1016/j.nmd.2016.05.004

1873-2364

Gholamreza Zamani, Morteza Heidari, Reza Azizi Malamiri, Mahmoud Reza Ashrafi, Mahmoud Mohammadi, Reza Shervin Badv, Seyed Ahmad Hosseini, Soodeh Salehi, Amin Shahrokhi, Mostafa Qorbani, Fathi Mohammad Reza,

Cerebral Palsy and Movement Disorders

We conducted a study to evaluate the quality of life in boys with Duchenne muscular dystrophy aged 8-18 years, compared with that in matched healthy controls. A total of 85 boys with Duchenne muscular dystrophy aged 8-18 years and 136 age, sex and living place matched healthy controls were included in this study. Patients and one of their parents separately completed the 27-item Persian version of KIDSCREEN questionnaire (child and adolescent version and parent version). From the children's perspective, the quality of life in patients was found to be lower in two subclasses: "physical activities and health" (p < 0.001) and "friends" (p = 0.005). Parental estimation of their sick child's quality of life was significantly lower than children's own assessment in two subclasses: "physical activities and health" (p < 0.001) and "general mood and feelings" (p < 0.001). Our results indicate that boys with Duchenne muscular dystrophy have quite a satisfactory quality of life. A happier and more hopeful life can be promoted through increasing social support and improving the parental knowledge regarding their child's more positive life perspective.