Related Experiment Video

Updated: Jan 12, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
09:18

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Published on: January 12, 2019

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Gaps and Challenges in the Transition of Care in Neuromuscular Disorders With a Focus on Duchenne Muscular Dystrophy

Alessia Marcassoli1, Nethmi Rajapakse2, Erika Guastafierro1

  • 1UOC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.

Pediatric Neurology
|November 5, 2025
PubMed

Insights

Transitioning Duchenne Muscular Dystrophy patients from pediatric to adult care requires improved multidisciplinary collaboration and patient-centered approaches. Addressing psychological and social needs is crucial for a successful transition into adult life.

Area of Science:

  • Neurology
  • Pediatrics
  • Healthcare Management

Background:

  • The transition from pediatric to adult healthcare presents significant challenges for patients with neuromuscular disorders, particularly Duchenne Muscular Dystrophy.
  • This review examines the transition experiences of patients and families, focusing on daily life aspects.

Purpose of the Study:

  • To investigate the transition experience from pediatric to adult care for patients with Duchenne Muscular Dystrophy.
  • To identify key factors influencing the transition process and patient well-being.

Main Methods:

  • A comprehensive literature search was conducted across six major electronic databases (Medline, Embase, PsycINFO, CINHAL, Web of Science, SCOPUS) for studies published between January 2000 and December 2024.
  • Qualitative synthesis was performed on 26 selected articles, analyzing data on transition processes, daily living activities, and interpersonal relationships.

Main Results:

  • Patients and caregivers emphasize the need for enhanced multidisciplinary collaboration between pediatric and adult care teams.
  • An adolescent-centered approach, encouraging direct patient-caregiver communication about health needs, is recommended.
  • Psychological and social factors significantly impact the transition journey across various life domains.

Conclusions:

  • The absence of structured transition guidelines leaves patients and families feeling unsupported.
  • Transition programs must adopt a holistic approach, encompassing all life areas.
  • Strategies to boost engagement in social, educational, and professional settings are vital for successful patient transitions.
Abstract

Keywords:
AdolescentCaregiversDisabilityDuchenne Muscular DystrophyGapsQuality of LifeTransition of care

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