The past decade has seen tremendous advances in the diagnosis and treatment for boys and men with Duchene muscular dystrophy (DMD), a life-limiting X-linked recessive disorder. Life expectancy has improved from mid-teens to mid-20s with the use of glucocorticoids, and beyond the third decade with ventilator support and multidisciplinary care. The supplement “Specialty Care for the Patient with Duchenne Muscular Dystrophy," will be published in the October 2018 issue of
Pediatrics. The supplement aims to raise the standard of care and improve quality of life for those living with the condition. These articles build on the recent
DMD care considerations (Lancet Neurology January 2018) through a discussion of the complexities involved in decision-making, the medical controversies, and the future directions for research, all of which vary by subspecialty. Themes include the need for a more anticipatory approach to diagnosis and therapeutic intervention across specialties; the need to define and disseminate best practices for multidisciplinary care, including primary care and emergency medical management; and the need to couple prolonged survival with better patient quality of life, prompting a greater emphasis on psychosocial issues and transitions of care across the lifespan.
The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org and follow us on Twitter @AmerAcadPeds