Quality of life assessment in patients with duchenne muscular dystrophy

Background: Duchenne muscular dystrophy is associated with variable physical and psychosocial sequalae, to patients and their caregivers. Aim: This study aimed to assess quality of life in various dimensions in children with Duchenne Muscular Dystrophy (DMD) and in their caregivers. Patients and methods: This study included all children diagnosed with Duchene Muscular Dystrophy (DMD) registered in the Pediatric Neurology Clinic of Alexandria University Specialized Children’s Hospital. Pediatric Quality of Life (PedsQL ™ 3.0) Duchenne Muscular Dystrophy Module was applied to the children and their caregivers. Results: In toddler group, the mean score was 34.41 ± 26.84 SD for daily activity, 48.64 ± 21.41 SD for medications, 28.71 ± 20.70 SD for anxiety, 60.15 ± 21.01 SD for communication and 42.98 ± 15.41 SD and for total quality of life. In parents’ group, the mean scores were as following: 45.35 ± 30.66 SD for daily activity, 50.32 ± 18.79 SD for medications, 20.40 ± 19.32 SD for anxiety, 54.59 ± 20.92 SD communication and 42.55 ± 14.86 SD for total quality of life. Conclusion: Duchenne muscular dystrophy causes significant impairment in all aspects of quality of life in patients and their caregivers