https://orcid.org/0000-0001-6433-7997
Key Points
A successful transfer of care is 2 visits with a comprehensive adult sickle cell program in the first year, in person or via telemedicine.
A successful integration into adult care is completion of 50% of scheduled outpatient visits annually in 5 years after transfer of care
Sickle cell disease (SCD), an autosomal recessive hemoglobinopathy, affects approximately 100,000 people in the United States1. The process of transitioning from pediatric to adult SCD health care systems can be disjointed and poorly coordinated, contributing to the high morbidity and mortality seen in this population. There is no universally accepted definition of a successful SCD care transition or existing standards and recommendations for SCD clinicians. The National Alliance of Sickle Cell Centers (NASCC) uses a described modified Delphi process to reach consensus among its members, through which we defined standards and recommendations for transitioning care from pediatric to adult care health systems, including the definition of successful transfer and integration into adult care and the essential health data elements needed for a standardized EHR transition note to facilitate clinician communication. NASCC members from pediatric, adult and lifespan SCD centers evaluated standards and recommendations for successful transfer and integration of care as well as pediatric and adult transition program operating practices. Consensus was achieved for 4 Standards and 14 Recommendations for transition of pediatric to adult care in SCD in the areas of transition policies, documents, tracking, definitions of successful transfer and transition of care, and initial visit responsibilities. This initiative defines two key elements of successful transition, which will allow for the study of interventions to improve outcomes. Importantly, these materials now provide the needed framework and quantifiable metrics for clinicians to evaluate their transition programs for quality improvement.
