[Transition experience of patients with neuromuscular disease]

Area of Science:

• Neurology
• Pediatrics
• Healthcare Management

Background:

• Neuromuscular diseases are chronic, progressive genetic disorders often leading to physical and emotional disabilities.
• Increased survival rates in pediatric patients necessitate a transition to adult healthcare settings.
• This transition presents significant challenges for patients and healthcare systems.

Purpose of the Study:

• To report on a clinical practice designed for the transition of adolescents with neuromuscular diseases.
• To evaluate the achievements, findings, and challenges of this transition process.
• To inform future strategies for pediatric to adult care transitions in chronic diseases.

Main Methods:

• A collaborative clinical practice was established between Hospital Garrahan and Hospital Ramos Mejía.
• The program focused on the transition of 27 adolescents with neuromuscular diseases during 2015.
• The process involved assessing and addressing the unique needs of this patient population.

Main Results:

• The experience provided valuable insights into the practical aspects of transitioning care.
• Specific achievements and challenges encountered during the transition were documented.
• Data gathered informs the refinement of transition protocols for neuromuscular disease patients.

Conclusions:

• Successful transition of care requires careful planning and inter-institutional collaboration.
• Addressing both medical and psychosocial needs is crucial for adolescents with neuromuscular diseases.
• This clinical practice offers a model for managing the complexities of lifelong care for chronic conditions.