Duchenne Muscular Dystrophy: New Resource to Guide Clinical Care

Hello. I'm Georgina Peacock, director of the Division of Human Development and Disability at the CDC, speaking to you as part of the CDC Expert Commentary series on Medscape. I'm pleased to speak with you about an important development that will help improve quality of life for people who have Duchenne muscular dystrophy.

Duchenne is a rare, severe neuromuscular disease that affects males and typically begins before 5 years of age. It's characterized by progressive muscle weakness affecting multiple body systems.

Comprehensive care considerations, recently published by the Lancet Neurology,^[1,2,3] are now available to help guide care for those with Duchenne. This set of three articles, available online in full text for free, is an update of the first care considerations published in 2010. The new care considerations provide comprehensive clinical care guidance across several medical specialty areas and include important new sections in the areas of endocrinology, primary and emergency care, and transitions of care across the lifespan.

Patients with Duchenne benefit from having a medical home that provides routine healthcare and communicates frequently with the neuromuscular specialist. Because it's a rare disorder, emergency room staff and physicians are often unfamiliar with Duchenne and its complications. Individuals with Duchenne and their caregivers can carry an emergency card with them at all times to facilitate emergency care. The card includes information on their diagnosis, health status, medications, and other important information. An understanding of the key issues in primary and emergency care can optimize treatment and health outcomes.

I want to quickly highlight considerations for individuals with Duchenne transitioning from adolescence into adult life, included as a new section in part 3 of the article series.^[3] Men with Duchenne are now living well into adulthood, and it is important that clinicians aid these individuals in transitioning from adolescence into adult life. Independent living, managing medical care, planning for education or employment, and fostering meaningful relationships with others are all essential components of transition planning. Therefore, reviewing and updating a written transition plan with a clinician or care coordinator each year can be helpful. Please refer to the article listed on this page to read more about this and other considerations that can help clinicians contribute to this important aspect of care. Much of the information provided in the article is not limited to patients with Duchenne and can be used as a resource in modeling transition planning for other chronic and lifelong conditions.

The updated Duchenne care considerations and accompanying appendices^[1,2,3]offer resources for clinicians in many specialty areas. By utilizing the considerations and tools included with them, clinicians can optimize care for individuals living with Duchenne, maximizing health and quality of life into and through adulthood. The articles are free with registration at the Lancet Neurology website.

Primary care providers are often the first to suspect a diagnosis of muscular dystrophy. If you're concerned about the physical development of a patient, please visit childmuscleweakness.org, which has an online tool designed to assist clinicians in making muscle weakness diagnoses earlier. For more information about Duchenne muscular dystrophy or the new care considerations, please see the resources on this page or visit the CDC website.

Thank you.