Monograph: Transitions from Pediatric to Adult Neuromuscular Care-Article

Article

Pdf Summary

This 2025 AANEM monograph by Cynthia Wozow and Kathryn Mosher provides a practical guide for transitioning individuals with childhood-onset neuromuscular disorders (NMDs) from pediatric to adult healthcare. Advances in care have increased survival into adulthood for these patients, requiring an effective healthcare transition—shifting from a child- and family-centered model to an adult- and patient-centered model. Despite this need, only 17% of youth with special healthcare needs receive adequate transition support.<br /><br />The authors outline the widely endorsed "Six Core Elements" of healthcare transition (Got Transition model), which include establishing a transition policy, tracking progress, assessing transition readiness, planning, transferring care (with or without changing clinicians), and confirming transfer completion. Readiness assessments and tools are crucial, especially tailored for NMD patients who may have mobility and cognitive challenges.<br /><br />Barriers to successful transition are numerous: difficulty finding adult providers with NMD expertise, limited provider training and confidence in managing disabilities, insurance and benefits reapplication complexities, diminished access to multidisciplinary care (common in pediatric settings), physical accessibility challenges, transportation issues, guardianship and supported decision-making legalities, end-of-life care discussions, educational and vocational support, financial burdens, and housing arrangements.<br /><br />To improve outcomes, the article emphasizes strategies such as individualized readiness evaluations, enhanced bidirectional communication between pediatric and adult teams, optimized electronic medical records for shared information, telemedicine use to overcome geography and access issues, and dedicated transition clinics that provide comprehensive, coordinated care. Collaborative institutional partnerships and educational efforts to increase provider competence in disability care are highlighted as successful models.<br /><br />In summary, intentional, multidisciplinary planning and communication, addressing systemic barriers and prioritizing accessibility, are essential for ensuring continuity and quality of care as NMD patients move into adulthood, which ultimately improves their health and quality of life.

Keywords

childhood-onset neuromuscular disorders

healthcare transition

pediatric to adult care

Six Core Elements

transition readiness assessment

barriers to transition

adult neuromuscular providers

telemedicine in transition

multidisciplinary care

transition clinics