Quality of Life and Sleep in Children Diagnosed with Duchenne Muscular Dystrophy and Their Mothers' Level of Anxiety: a Case-Control Study

Objective: Duchenne Muscular Dystrophy (DMD) is the most severe form among a variety of muscular dystrophies. While studies into the etiology and pathophysiology of DMD have progressed fast, there still is no therapy for the disease. The presence of a severe chronic disease such as DMD can seriously affect patients as well as caregivers. In this study, we planned to compare quality of life and sleep between cases diagnosed as DMD and healthy controls while at the same time assessing the levels of anxiety in the patients' mothers. Method: In this study, 17 cases with a diagnosis of DMD and 20 healthy controls were enrolled. All the patients and controls were male. The social status of patients and controls was assessed with a sociodemographic data form. To evaluate the children's quality of life, the Pediatric Quality of Life Inventory (PedsQL) was completed by children and parents. The Pittsburgh Sleep Quality Index (PSQI) is a self-reported questionnaire used to evaluate the quality of sleep in children. We measured the mothers' anxiety with the State-Trait Anxiety Inventory (STAI)-state anxiety and trait anxiety forms. Mann-Whitney U test and chi square test were used for statistical analysis. Results: A statistically significant difference was found in comparing both parents' and children's PedsQL forms between patients and controls. The quality of sleep also differed significantly between cases and controls. In the STAI state and trait anxiety forms, no significant difference was found between the anxiety levels of patients' mothers and the control persons' mothers. Conclusion: As key result of our study, we found that there are more problems in the DMD patients' sleep, and the quality of life is lower than in the healthy controls. Problems in motor functionality may affect emotional and social functionality and possibly the quality of children's sleep.