Background
Duchenne muscular dystrophy (DMD) is a severe X-linked recessive disorder causing progressive motor impairment, loss of ambulation, and ventilatory dependence. It significantly affects the psychosocial well-being of patients and caregivers, impacting emotional, social, and mental health dimensions, with serious implications for quality of life (QoL). This meta-analysis synthesizes evidence on the psychosocial impacts of DMD, focusing on QoL outcomes.
Objectives
To evaluate the psychosocial impacts of DMD on QoL in patients and caregivers, identify influencing factors, and provide insights for interventions to improve well-being.
Methods
A systematic search of PubMed, Embase, Cochrane Library, and PsycINFO identified studies published up to 2024. Eligible studies included RCTs, observational, and qualitative research on QoL or psychosocial outcomes in DMD patients or caregivers. Data extraction followed PRISMA guidelines, with risk of bias assessed using appropriate tools. A random-effects model was used for synthesis.
Results
Analysis of 25 studies (1,842 participants) showed significantly lower QoL in DMD patients compared to healthy controls, with a mean difference of −6.7 points (95% CI: −8.4 to −5.1, p < 0.001) on the PedsQL scale. Emotional well-being was most affected, followed by physical and social functioning. Caregivers reported high psychological distress, with 42% experiencing clinically significant anxiety or depression. Interventions such as family-centered support, mental health counseling, and social support improved QoL, with earlier access yielding better outcomes.
Conclusion
DMD profoundly impacts the psychosocial well-being of patients and caregivers, underscoring the need for holistic care addressing emotional, social, and mental health challenges. Early interventions and caregiver support are critical to improving outcomes and QoL. These findings guide the development of comprehensive, family-centered care models in DMD management.