Management of spinal muscular atrophy: nursing clinical commentary and best practices update

Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that has seen a paradigm shift in its management due to early diagnostic strategies, disease-modifying therapies, and integrated care models. Despite these advances, the nursing role - essential across the care continuum - remains underrepresented in clinical protocols and guidelines.

This Clinical commentary, authored by Italian nurses with direct expertise in SMA care, outlines the key responsibilities, practices, and procedural frameworks that define specialized nursing contributions. Nurses are involved from the earliest phases of care, including neonatal screening and diagnostic communication, and extend their role into the long-term home-based management of children with SMA. Responsibilities include administering and monitoring advanced therapies (onasemnogene abeparvovec, nusinersen, risdiplam), delivering therapeutic education, managing care transitions, and maintaining consistent family engagement. Emphasis is placed on nurses as coordinators of care, clinical educators, and relational anchors. Structured follow-up flowcharts for each therapy illustrate the clinical and educational dimensions of nursing practice. The paper highlights the need for specialized training and standardized roles - such as nurse case managers - as well as for health systems to track nursing-sensitive outcomes.

The integration of specialized nursing into SMA care is not only ethically and clinically warranted-it is essential to achieving sustainable, equitable, and high-quality outcomes for patients and families. This paper calls for the formal recognition of nursing as a core component of multidisciplinary SMA care teams.