Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center

Pediatr Blood Cancer. 2023 Jan;70(1):e29961. doi: 10.1002/pbc.29961. Epub 2022 Sep 12.


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.

Keywords: comprehensive care; comprehensive center; guideline-based care; implementation; sickle cell disease.

MeSH terms

  • Anemia, Sickle Cell* / therapy
  • Child
  • Consensus
  • Humans