Evaluation of the psychosocial status and quality of life of healthy siblings of children diagnosed with Duchenne Muscular Dystrophy

Objective: Duchenne Muscular Dystrophy (DMD) is a genetic disorder characterized by progressive muscle wasting that leads to difficulties in mobility and ultimately to the need for assisted ventilation, significantly affecting the lives of patients and their families. The aim of this study is to identify the burden observed in healthy siblings of patients with DMD, to determine the factors affecting siblings' quality of life and psychosocial status, and to assess whether there is any impact on quality of life parameters and, if so, which components of quality of life are affected. Materials and Methods: The study included healthy siblings aged 8–18 years and their parents of 50 patients with DMD followed at the Gaziantep University Pediatric Neurology outpatient clinic, as well as 35 healthy children aged 8–18 years and their parents who presented to the general pediatrics outpatient clinic for routine check-ups. Parents in the study group completed the Sociodemographic Data Form, Strengths and Difficulties Questionnaire (SDQ; parent form), Emotion Regulation Checklist (ERC), and Family Assessment Device (FAD). Children completed the Child and Youth Resilience Measure (CYRM), SDQ (child form), and Pediatric Quality of Life Inventory (PedsQL). Results: While a rate of 16% school year loss/absenteeism was observed among healthy children in the study group, school attendance was found to be 97.1% among healthy children in the control group. The educational levels of mothers and fathers differed significantly between the participant groups. No statistically significant differences were found between the study and control groups in terms of scores on the Child Psychological Resilience Scale (CPRS), Quality of Life Scale (QoLS), Family Assessment Scale (FAS), or parent-reported Strengths and Difficulties Questionnaire (SDQ). However, based on the SDQ completed by the children, the study group was found to exhibit fewer behavioral problems compared to the control group. Responses to the overall Emotion Regulation Scale (ERS) and its subscales of emotional variability and emotion regulation showed statistically significant differences between groups. According to parent reports, siblings in the study group were found to experience difficulties in emotion regulation. Conclusion: Despite the substantial emotional burden imposed by DMD on families, our findings indicate that the majority of healthy siblings demonstrate good psychological adjustment, with only a mildly increased risk in terms of emotional symptoms. This study identifies both general psychosocial factors and disease-specific factors that may increase the risk of emotional problems in healthy siblings, and provides guidance for clinicians regarding screening for emotional difficulties and initiating interventions when necessary. Keywords: Duchenne Muscular Dystrophy, Psychosocial Status, Healthy Siblings, Quality of Life