Shifting the paradigm: from reactive to proactive and precision rehabilitation across the lifespan in pediatric neuromuscular disorders

Advances in molecular diagnostics, newborn screening, and disease-modifying therapies have transformed the natural history of pediatric neuromuscular disorders, creating an urgent need to redefine rehabilitation. Traditional reactive models, focused on managing established disability and its complications, are increasingly inadequate given earlier diagnosis, improved survival, and opportunities to preserve developmental potential, optimize functioning, and enhance participation. This narrative review proposes a conceptual framework for proactive rehabilitation in pediatric neuromuscular disorders. Grounded in the biopsychosocial perspective of the International Classification of Functioning, Disability and Health (ICF), proactive rehabilitation is defined as a preventive, anticipatory, person-centered, and adaptive approach. Core elements include early identification, dynamic risk stratification, habilitation and rehabilitation across developmental stages, prevention of secondary complications, optimization of functioning, promotion of physical activity and participation, integration with disease-modifying therapies, digital health technologies, and family-centered life-course care. Rather than responding to established disability, this model emphasizes functional surveillance and interventions aimed at preserving developmental trajectories, maximizing participation, and improving quality of life. Proactive rehabilitation should be regarded not simply as earlier rehabilitation, but as a comprehensive model of care that adapts interventions to the individual’s developmental stage, clinical trajectory, environmental context, and personal goals. The framework organizes established and emerging rehabilitation practices around anticipated risk, longitudinal functional trajectories, timely adaptation of interventions, providing a bridge from disease-specific Standard of Care to precision rehabilitation, across the life course.