[Principles of multidisciplinary management of Duchenne muscular dystrophy]

Area of Science:

• Neurology
• Pediatrics
• Genetics

Background:

• Duchenne muscular dystrophy (DMD) is a progressive genetic disorder.
• Advances in management have increased lifespan, with over 90% of children now reaching adulthood.
• Care transitions from pediatric to adult services present significant organizational challenges.

Purpose of the Study:

• To emphasize the importance of multidisciplinary consultations for optimal Duchenne muscular dystrophy (DMD) management.
• To highlight the necessity of clear communication and phased information delivery to children and parents regarding diagnosis and symptoms.
• To address the challenges and importance of care continuity during the transition from pediatric to adult care.

Main Methods:

• Review of current care strategies for Duchenne muscular dystrophy (DMD).
• Analysis of communication protocols for diagnosis announcement and ongoing patient support.
• Examination of care transition models from pediatric to adult services.

Main Results:

• Multidisciplinary care organization is essential for managing the diverse aspects of Duchenne muscular dystrophy (DMD).
• Early, clear, and age-appropriate communication is fundamental for patient and family understanding.
• Care continuity and support throughout the disease trajectory, including terminal phases, are critical.

Conclusions:

• Optimizing Duchenne muscular dystrophy (DMD) care requires a coordinated, multidisciplinary approach.
• Effective communication strategies and seamless care transitions are paramount for improving patient outcomes and quality of life.
• Ongoing therapeutic trials must complement, not replace, comprehensive patient management and support.