Document Type
Article
Publication Date
9-10-2025
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. © 2025 American Society of Hematology. Published by Elsevier Inc. Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0), permitting only noncommercial, nonderivative use with attribution. All other rights reserved.
Recommended Citation
Guarino, Stephanie Howe; Jain, Akshat; Madisetti, Mohan; Rivlin, Kenneth; Desai, Payal C.; Kanter, Julie; Lanzkron, Sophie; and Manwani, Deepa, "National Alliance of Sickle Cell Centers Consensus Standards for Transition to Adult Care in Sickle Cell Disease" (2025). Division of Gastroenterology and Hepatology Faculty Papers. Paper 118.
https://jdc.jefferson.edu/gastro_hepfp/118
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.
Supplemental Data
Supplemental Data 2.ppt (652 kB)
Supplemental Data 2
Supplemental Data 3.ppt (2740 kB)
Supplemental Data 3
PubMed ID
40472332
Language
English
Comments
This article is the author's final published version in Blood Advances, Volume 9, Issue 18, September 23, 2025, Pages 4585 - 4591.
The published version is available at https://doi.org/10.1182/bloodadvances.2025015909. Copyright © 2025 American Society of Hematology.