title: The quality of life in boys with Duchenne muscular dystrophy.
abstract: 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.
authors.affiliation: Department of Pediatric Neurology, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Gholamreza
authors.initials: G
authors.lastname: Zamani
authors.affiliation: Department of Pediatrics, Shahid Bahonar Children Hospital, Alborz University of Medical Sciences, Karaj, Iran; Department of Pediatric Neurology, Vali-e-Asr Hospital, Imam Khomeini Hospital Complex, Tehran University of Medical Sciences, Tehran, Iran. Electronic address: dr.heidari.m.neu@gmail.com.
authors.forename: Morteza
authors.initials: M
authors.lastname: Heidari
authors.affiliation: Department of Pediatric Neurology, Golestan Medical, Educational and Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.
authors.forename: Reza
authors.initials: R
authors.lastname: Azizi Malamiri
authors.affiliation: Department of Pediatric Neurology, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Mahmoud Reza
authors.initials: MR
authors.lastname: Ashrafi
authors.affiliation: Department of Pediatric Neurology, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Mahmoud
authors.initials: M
authors.lastname: Mohammadi
authors.affiliation: Department of Pediatric Neurology, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Reza
authors.initials: R
authors.lastname: Shervin Badv
authors.affiliation: Department of Pediatrics, Golestan University of Medical Sciences, Gorgan, Iran.
authors.forename: Seyed Ahmad
authors.initials: SA
authors.lastname: Hosseini
authors.affiliation: Department of Pediatric Neurology, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Soodeh
authors.initials: S
authors.lastname: Salehi
authors.affiliation: Pediatric Neurorehabilitation Research Center, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
authors.forename: Amin
authors.initials: A
authors.lastname: Shahrokhi
authors.affiliation: Department of Community Medicine, School of Medicine, Alborz University of Medical Sciences, Karaj, Iran.
authors.forename: Mostafa
authors.initials: M
authors.lastname: Qorbani
authors.affiliation: Department of Pediatric Neurology, Golestan Medical, Educational and Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.
authors.forename: Mohammad Reza
authors.initials: MR
authors.lastname: Fathi
mesh_terms: D000293:Adolescent; D000339:Affect; D002648:Child; D033062:Friends; D006801:Humans; D008297:Male; D009043:Motor Activity; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology*; D010290:Parents / Q000523:psychology; D011788:Quality of Life; D012574:Schools; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Duchenne muscular dystrophy; KIDSCREEN questionnaire; Quality of life