Disproportionate pace of evidence-based care implementation in pediatric-onset multiple sclerosis: consequences and opportunities.

backgroundPediatric-onset multiple sclerosis (POMS) is a chronic autoimmune disease of the central nervous system that requires lifelong care. Long-term outcomes in POMS depend on both early therapeutic intervention and sustained continuity of specialty care into adulthood. However, there is a discrepancy between the speed and consistency at which pharmaceutical disease-modifying therapies and best practices for transition-to-adult care are incorporated into clinical practice. While pharmaceutical disease-modifying therapies have been rapidly incorporated into routine practice, uptake of best practices for transition-to-adult care has been inconsistent and slow, despite evidence-based guidelines and models. MAIN BODY: There is an urgent need for the implementation of transition-to-adult care interventions to "catch up" to that of disease-modifying therapies for POMS. Closing this gap is important because without a system of continuous care, patients lose access to disease-modifying therapies, negating the benefits of early and rapid uptake and jeopardizing long-term neurologic stability and outcomes as youth with multiple sclerosis (MS) grow into adulthood. This paper applies the Framework to Assess Speed of Translation (FAST) to examine this contrast in implementation pace and understand why pharmaceutical disease-modifying therapies have diffused rapidly, whereas innovations to support transitioning to adult care have not. We examine how innovation, adopter and contextual factors affect the diffusion and uptake of innovations in POMS, illustrating how interventions with observable relative advantage, strong champions, and compatibility with existing medical paradigms are propelled through the system, whereas interventions that are perceived as more complex, diffuse in ownership, and less visibly linked to outcomes are hindered. We argue that future efforts to improve transition-to-adult care in POMS must systematically identify and address determinants of pace that have slowed progress to date. Guided by the Designing for Accelerated Translation (DART) framework, we propose strategies for developing and mapping transition-to-adult care interventions that emphasize rapid translation.

conclusionOur objective is to facilitate the acceleration of translation of evidence-based transition-to-adult care practices in POMS so that continuity of care keeps pace with therapeutic innovation, maximizing long-term outcomes for this population.