Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center.
Monica L HulbertDeepa ManwaniEmily Riehm MeierOfelia A AlvarezR Clark BrownMichael U CallaghanAndrew D CampbellThomas D CoatesMelissa J Frei-JonesJane Silva HankinsMatthew M HeeneyLewis Li-Yen HsuJeffrey D LebensburgerCharles T QuinnNirmish ShahKim Smith-WhitleyCourtney Dawn ThornburgJulie KanterPublished in: Pediatric blood & cancer (2022)
Sickle cell disease (SCD) requires coordinated, specialized medical care for optimal outcomes. There are no United States (US) guidelines that define a pediatric comprehensive SCD program. We report a modified Delphi consensus-seeking process to determine essential, optimal, and suggested elements of a comprehensive pediatric SCD center. Nineteen pediatric SCD specialists participated from the US. Consensus was predefined as 2/3 agreement on each element's categorization. Twenty-six elements were considered essential (required for guideline-based SCD care), 10 were optimal (recommended but not required), and five were suggested. This work lays the foundation for a formal recognition process of pediatric comprehensive SCD centers.