Introduction: Advancements in clinical care have enabled many individuals with Duchenne Muscular Dystrophy (DMD) to live longer into adulthood, highlighting the need for studies to characterize this emerging population.
Objective: To provide an updated sociodemographic and clinical profile of adult (≥18 years) males with DMD using population-based surveillance data from the Muscular Dystrophy Surveillance Tracking and Research network (MD STARnet).
Methods: Previously, MD STARnet data were used to describe sociodemographic and clinical characteristics of adult males with DMD, born since 01/01/1982, who had healthcare visits through 2011. The present study adds healthcare visit data for 2012-2016. We provide an updated profile for 173 adult males within the 3 sites (Colorado, Iowa, New York) and describe sociodemographic characteristics using the latest data, and clinical characteristics based on first recorded diagnoses and interventions.
Results: As of 12/31/2016, nearly 53% of individuals were alive, 10% were lost to follow up, and 38% were deceased (median age at death=22.6 years). Over half (65%) were non-Hispanic White. At last clinic visit, the cohort had a median age of 22.5 years. Nearly 58% had public health insurance, 6% had private, and 32% had both. Nearly 6% had not completed high school, 72% had completed high school and/or further education, and in 22% data were unavailable. Most had been diagnosed with cardiomyopathy (74%). Fractures and neurobehavioral issues each were recorded in nearly 60%. Most (79%) were on non-invasive ventilation, and most (84%) were taking cardiac medications. Corticosteroids were ever used by 67% but by only 8.7% at time of last clinic visit or death.
Discussion: Our multi-site study results provide a benchmark for understanding DMD characteristics in adult males, and for examining the impact of evolving DMD care.