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

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12 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
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

Keywords

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

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10.1002/pbc.29961

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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

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title = "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), 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",

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",

note = "Publisher Copyright: {\textcopyright} 2022 Wiley Periodicals LLC.",

year = "2023",

month = jan,

doi = "10.1002/pbc.29961",

language = "English",

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journal = "Pediatric Blood and Cancer",

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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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AU - Hulbert, Monica L.

AU - Manwani, Deepa

AU - Meier, Emily Riehm

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.

AU - Quinn, Charles T.

AU - Shah, Nirmish

AU - Smith-Whitley, Kim

AU - Thornburg, Courtney

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

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Keywords

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