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

BACKGROUND

Transition from pediatric to adult care in neuromuscular disorders represents a great challenge for both patients and their families, and especially for patients with Duchenne Muscular Dystrophy. This review aims to investigate the transition experience from pediatric to adult care of patients and their families, considering different aspects of daily life.

METHODS

Medline, Embase, PsycINFO, CINHAL, Web of Science, and SCOPUS electronic databases were searched to identify studies published from January 2000 to December 2024. From the initial 1955 research articles, 26 were finally included for qualitative synthesis. Studies reported information about transition process, activities of daily living, and relationships.

RESULTS

Our results show the need, as expressed by patients and caregivers, for multidisciplinary collaboration between pediatric and adult care settings, proposing the adoption of an adolescent-centered approach that prompts patients to share their perspectives on specific health needs directly with caregivers. The findings underscore the importance of also considering the psychological and social aspects that can influence the transition path across different areas of life.

CONCLUSIONS

Without structured guidelines and indications, patients and families feel left alone during the transition process. Transition programs should consider all the life areas in which patients are involved, including strategies to improve engagement in social, educational, and professional settings.