The quality of life and access to healthcare in patients with Duchenne Muscular Dystrophy

Abstract

Objective: To describe the data collected in a survey on the quality of life, disease progression, and access to healthcare in patients with Duchenne Muscular Dystrophy (DMD). Methods: This is an observational study with an exploratory, descriptive nature, using questionnaires, with DMD patients who were assisted by an institution that protects and supports people with genetic diseases in the metropolitan region of Belo Horizonte-MG. A significance level of 5% was used and data were analyzed using R software version 4.0.3. Results: The study included four male participants, aged between 12 and 18 years (±). 75% were diagnosed between 2 and 5 years old. All participants reported not having access to free medication through the Unified Health System (SUS), but all had physiotherapy follow-up and private health insurance. Half of the participants did not receive emotional support and adequate information about the disease. Conclusion: DMD is a genetic disease that causes irreversible damage. Early access to treatment is crucial for a better prognosis and quality of life. Research with larger samples covering various city centers is needed for a better understanding of the social profile.