The Role of the Nurse Practitioner in Transitioning Pediatric Spinal Muscular Atrophy Patients to the Adult Clinic


Adult care of pediatric onset diseases/Transitions in Care

Poster Number: 1


Gabriella Tosto-D'Antonio, MSN, RN, Nicole LaMarca, DNP, MSN, CPNP, PMHS


1. Columbia University Medical Center, 2. Columbia University School of Nursing

Background:As children with pediatric life-limiting disorders are living into adulthood, challenges have been identified in the transition of care from pediatric to adult providers. With novel disease modifying therapies for spinal muscular atrophy (SMA), patients are living longer, requiring comprehensive interdisciplinary care across the lifespan. Care for individuals with SMA is a dynamic and individualized process, so a generalized transition model may not be best practice. While these models are important for outlining the essential components of a successful transition, the implementation and oversight of the transition plan necessitates a lead transition provider such as a nurse practitioner(NP). Objectives:To adapt the Neurology Transition Consensus Panel (NTC) principle recommendations to the SMA population and integrate the role of the NP as the lead transition provider. Approach:A literature search was conducted to review the transition of care from pediatric to adult care specifically for patients with SMA. Results:Although studies exist examining the transition of neuromuscular patients to adult care, there were no articles that proposed specific models for transitioning pediatric SMA patients. Four articles that explore medical and psychosocial challenges were found and applied to the SMA Transition Model. Conclusions:The transition plan for SMA patients is multifaceted and addresses the patient’s medical and psychosocial needs while resolving any logistical obstacles. The NTC principles are adapted to address SMA-specific concerns and include the NP as the lead transition provider. NPs have the skillset to evaluate patient readiness for transition, nurture responsibility, encourage autonomy across adolescence, and coordinate transition of care. As patient care moves to the adult center, the NP serves as the liaison to prevent gaps. Future studies should examine the efficacy of this model and patient satisfaction surrounding the transition of SMA care.