Consensus definition of essential, optimal, and suggested components of a pediatric Sickle Cell Disease Center

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), ten 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.

Standardizing elements of care in pediatric sickle cell disease centers: The road toward health equity

“…They aim at applying to SCD the model already in use with other rare and complex disorders of childhood such as cystic fibrosis and hemophilia for which a similar model has granted patients with those diseases, good quality care, and an improved survival with better quality of life. 1 In fact, as the authors note, in spite of the scientific advancements and the isolated National Sickle Cell Disease Control Act, in the past 30 years the limited funding and investments for SCD have resulted in reduced access to comprehensive care, lack of improvement of the estimated median survival-which remained more or less the same in the past 20 years-and lack of development of implementation research.…”

“…In this issue of Pediatric Blood and Cancer , Hulbert et al. present a consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease (SCD) center in the United States, 1 similarly to what has been done for adults in the same country by Kanter et al 2 . The authors utilized a modified Delphi consensus‐seeking process involving 19 SCD pediatric experts from large academic centers to set defined standards of SCD care within the United States.…”

“…The authors conclude that the consensus and identification of the elements of care of a pediatric SCD center among experts is just the first step toward defining an accreditation process for comprehensive pediatric SCD centers in order to pursue federal funding and ensure quality of care and access to care for all children living with SCD. They aim at applying to SCD the model already in use with other rare and complex disorders of childhood such as cystic fibrosis and hemophilia for which a similar model has granted patients with those diseases, good quality care, and an improved survival with better quality of life 1 …”