Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center
Monica L. Hulbert, Deepa Manwani, Emily Riehm Meier, Ofelia Álvarez, R. Clark Brown, Michael U. Callaghan, Andrew Campbell, Thomas D. Coates, Melissa Frei‐Jones, Jane S. Hankins, Matthew M. Heeney, Lewis L. Hsu, Jeffrey D. Lebensburger, Charles T. Quinn, Nirmish Shah, Kim Smith‐Whitley, Courtney D. Thornburg, Julie Kanter
Abstract
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.