Transition to Adult Care in Turner Syndrome: Research Gaps and Strategies for Achieving Success.

Abstract

Health care transition is a process by which children with chronic medical conditions gradually and purposefully move from pediatric to adult-centered health care systems. While transition guidelines have been published by multiple national and international organizations, transition processes have not been optimized for many populations, including youth with Turner syndrome (TS). Numerous barriers exist, at both the system and individual/family level. Mitigating transition-related barriers requires a multi-faceted approach, including: conducting research to assess TS specific transition interventions and outcomes; developing educational/training initiatives and quality improvement efforts; engaging in advocacy/policy change; and implementing evidence-based strategies to optimize transition. The goals of this manuscript are to outline key research gaps that need to be addressed regarding health care transition in TS and to suggest strategies to optimize transition outcomes. Given the importance of a multi-disciplinary and patient-centered approach, we specifically outline the roles of pediatric health care teams (including navigators), adult health care teams, patients, caregivers, and institutional resources.