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

Monica L. Hulbert; Deepa Manwani; Emily Riehm Meier; Ofelia A. Alvarez; R. Clark Brown; Michael U. Callaghan; Andrew D. Campbell; Thomas D. Coates; Melissa J. Frei-Jones; Jane S. Hankins; Matthew M. Heeney; Lewis L. Hsu; Jeffrey D. Lebensburger; Charles T. Quinn; Nirmish Shah; Kim Smith-Whitley; Courtney Thornburg; Julie Kanter

doi:10.1002/pbc.29961

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

Monica L. Hulbert
, Deepa Manwani
, Emily Riehm Meier
, Ofelia A. Alvarez
, R. Clark Brown
, Michael U. Callaghan
, Andrew D. Campbell
, Thomas D. Coates
, Melissa J. Frei-Jones
, Jane S. Hankins
, Matthew M. Heeney
, Lewis L. Hsu
, Jeffrey D. Lebensburger
, Charles T. Quinn
, Nirmish Shah
, Kim Smith-Whitley
, Courtney Thornburg
, Julie Kanter

Research output: Contribution to journal › Article › peer-review

18 Scopus citations

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.

Original language	English (US)
Article number	e29961
Journal	Pediatric Blood and Cancer
Volume	70
Issue number	1
DOIs	https://doi.org/10.1002/pbc.29961
State	Published - Jan 2023
Externally published	Yes

Keywords

comprehensive care
comprehensive center
guideline-based care
implementation
sickle cell disease

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Hematology
Oncology

Access to Document

10.1002/pbc.29961

Cite this

Hulbert, M. L., Manwani, D., Meier, E. R., Alvarez, O. A., Brown, R. C., Callaghan, M. U., Campbell, A. D., Coates, T. D., Frei-Jones, M. J., Hankins, J. S., Heeney, M. M., Hsu, L. L., Lebensburger, J. D., Quinn, C. T., Shah, N., Smith-Whitley, K., Thornburg, C., & Kanter, J. (2023). Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center. Pediatric Blood and Cancer, 70(1), Article e29961. https://doi.org/10.1002/pbc.29961

Hulbert, ML, Manwani, D, Meier, ER, Alvarez, OA, Brown, RC, Callaghan, MU, Campbell, AD, Coates, TD, Frei-Jones, MJ, Hankins, JS, Heeney, MM, Hsu, LL, Lebensburger, JD, Quinn, CT, Shah, N, Smith-Whitley, K, Thornburg, C & Kanter, J 2023, 'Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center', Pediatric Blood and Cancer, vol. 70, no. 1, e29961. https://doi.org/10.1002/pbc.29961

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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.",

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author = "Hulbert, \{Monica L.\} and Deepa Manwani and Meier, \{Emily Riehm\} and Alvarez, \{Ofelia A.\} and Brown, \{R. Clark\} and Callaghan, \{Michael U.\} and Campbell, \{Andrew D.\} and Coates, \{Thomas D.\} and Frei-Jones, \{Melissa J.\} and Hankins, \{Jane S.\} and Heeney, \{Matthew M.\} and Hsu, \{Lewis L.\} and Lebensburger, \{Jeffrey D.\} and Quinn, \{Charles T.\} and Nirmish Shah and Kim Smith-Whitley and Courtney Thornburg and Julie Kanter",

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AU - Alvarez, Ofelia A.

AU - Brown, R. Clark

AU - Callaghan, Michael U.

AU - Campbell, Andrew D.

AU - Coates, Thomas D.

AU - Frei-Jones, Melissa J.

AU - Hankins, Jane S.

AU - Heeney, Matthew M.

AU - Hsu, Lewis L.

AU - Lebensburger, Jeffrey D.

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AU - Kanter, Julie

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AB - 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.

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KW - comprehensive center

KW - guideline-based care

KW - implementation

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

Abstract

Keywords

ASJC Scopus subject areas

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