National Alliance of Sickle Cell Centers consensus standards for transition to adult care in sickle cell disease

Abstract

Sickle cell disease (SCD), an autosomal recessive hemoglobinopathy, affects ~100 000 people in the United States.1 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, nor are there existing standards and recommendations for SCD clinicians. 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, as well as the essential health data elements needed for a standardized electronic health record transition note to facilitate clinician communication. NASCC members from pediatric, adult, and life span 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 from 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 2 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.