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

Monica L Hulbert¹, Deepa Manwani², Emily Riehm Meier³, Ofelia A Alvarez⁴, R Clark Brown⁵, Michael U Callaghan⁶, Andrew D Campbell⁷, Thomas D Coates⁸, Melissa J Frei-Jones⁹, Jane S Hankins¹⁰, Matthew M Heeney¹¹, Lewis L Hsu¹², Jeffrey D Lebensburger¹³, Charles T Quinn¹⁴, Nirmish Shah¹⁵, Kim Smith-Whitley^{16

17}, Courtney Thornburg¹⁸, Julie Kanter¹⁹

Affiliations

¹ Division of Pediatric Hematology/Oncology, Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA.
² Division of Pediatric Hematology/Oncology, Children's Hospital at Montefiore/Albert Einstein College of Medicine, New York, New York, USA.
³ Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USA.
⁴ Division of Pediatric Hematology/Oncology, University of Miami School of Medicine, Miami, Florida, USA.
⁵ Division of Pediatric Hematology/Oncology, Children's Healthcare of Atlanta/Emory University School of Medicine, Atlanta, Georgia, USA.
⁶ Division of Pediatric Hematology/Oncology, Children's Hospital of Michigan, Detroit, Michigan, USA.
⁷ Division of Pediatric Hematology, Children's National Medical Center, Washington, District of Columbia, USA.
⁸ Cancer and Blood Disease Institute, Department of Pediatrics, Children's Hospital Los Angeles/University of Southern California Keck School of Medicine, Los Angeles, California, USA.
⁹ Division of Pediatric Hematology/Oncology, University of Texas School of Medicine-San Antonio, San Antonio, Texas, USA.
¹⁰ Department of Hematology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
¹¹ Dana Farber/Boston Children's Cancer and Blood Disorders Center, Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
¹² Division of Pediatric Hematology/Oncology, University of Illinois at Chicago, Chicago, Illinois, USA.
¹³ Division of Pediatric Hematology/Oncology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
¹⁴ Division of Pediatric Hematology/Oncology, Cincinnati Children's Hospital Medical Center and, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
¹⁵ Divisions of Pediatric Hematology Oncology and Hematology, Duke University School of Medicine, Durham, North Carolina, USA.
¹⁶ Department of Hematology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁷ Global Blood Therapeutics, San Francisco, California, USA.
¹⁸ Division of Pediatric Hematology/Oncology, Rady Children's Hospital/Department of Pediatrics, University of California San Diego School of Medicine, La Jolla, California, USA.
¹⁹ Division of Hematology, University of Alabama at Birmingham, Birmingham, Alabama, USA.

PMID: 36094289
DOI: 10.1002/pbc.29961

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

Monica L Hulbert et al. Pediatr Blood Cancer. 2023 Jan.

. 2023 Jan;70(1):e29961.

doi: 10.1002/pbc.29961. Epub 2022 Sep 12.

Authors

Affiliations

¹ Division of Pediatric Hematology/Oncology, Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA.
² Division of Pediatric Hematology/Oncology, Children's Hospital at Montefiore/Albert Einstein College of Medicine, New York, New York, USA.
³ Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USA.
⁴ Division of Pediatric Hematology/Oncology, University of Miami School of Medicine, Miami, Florida, USA.
⁵ Division of Pediatric Hematology/Oncology, Children's Healthcare of Atlanta/Emory University School of Medicine, Atlanta, Georgia, USA.
⁶ Division of Pediatric Hematology/Oncology, Children's Hospital of Michigan, Detroit, Michigan, USA.
⁷ Division of Pediatric Hematology, Children's National Medical Center, Washington, District of Columbia, USA.
⁸ Cancer and Blood Disease Institute, Department of Pediatrics, Children's Hospital Los Angeles/University of Southern California Keck School of Medicine, Los Angeles, California, USA.
⁹ Division of Pediatric Hematology/Oncology, University of Texas School of Medicine-San Antonio, San Antonio, Texas, USA.
¹⁰ Department of Hematology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
¹¹ Dana Farber/Boston Children's Cancer and Blood Disorders Center, Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
¹² Division of Pediatric Hematology/Oncology, University of Illinois at Chicago, Chicago, Illinois, USA.
¹³ Division of Pediatric Hematology/Oncology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
¹⁴ Division of Pediatric Hematology/Oncology, Cincinnati Children's Hospital Medical Center and, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
¹⁵ Divisions of Pediatric Hematology Oncology and Hematology, Duke University School of Medicine, Durham, North Carolina, USA.
¹⁶ Department of Hematology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁷ Global Blood Therapeutics, San Francisco, California, USA.
¹⁸ Division of Pediatric Hematology/Oncology, Rady Children's Hospital/Department of Pediatrics, University of California San Diego School of Medicine, La Jolla, California, USA.
¹⁹ Division of Hematology, University of Alabama at Birmingham, Birmingham, Alabama, USA.

PMID: 36094289
DOI: 10.1002/pbc.29961

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.

PubMed Disclaimer

Comment in

Standardizing elements of care in pediatric sickle cell disease centers: The road toward health equity.
Colombatti R. Colombatti R. Pediatr Blood Cancer. 2023 Jan;70(1):e30078. doi: 10.1002/pbc.30078. Epub 2022 Nov 3. Pediatr Blood Cancer. 2023. PMID: 36326131 No abstract available.
Comment on: Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center.
Bodas P, Beck L, Moser B, Delagrange J. Bodas P, et al. Pediatr Blood Cancer. 2023 May;70(5):e30205. doi: 10.1002/pbc.30205. Epub 2023 Jan 30. Pediatr Blood Cancer. 2023. PMID: 36715136 No abstract available.

References

REFERENCES

1. Kanter J, Meier ER, Hankins JS, Paulukonis ST, Snyder AB. Improving outcomes for patients with sickle cell disease in the United States: Making the case for more resources, surveillance, and longitudinal data. JAMA Health Forum. 2021;2(10):e213467. doi:https://doi.org/10.1001/jamahealthforum.2021.3467
1. Skinner MW, Soucie JM, McLaughlin K. The national haemophilia program standards, evaluation and oversight systems in the United States of America. Blood Transfus. Apr 2014;12 Suppl 3:e542-8. https://doi.org/10.2450/2014.0019-14s
1. Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA. Sep 10 2014;312(10):1033-48. https://doi.org/10.1001/jama.2014.10517
1. Reeves SL, Tribble AC, Madden B, Freed GL, Dombkowski KJ. Antibiotic prophylaxis for children with sickle cell anemia. Pediatrics. Mar 2018;141(3)https://doi.org/10.1542/peds.2017-2182
1. Kanter J, Phillips S, Schlenz AM, et al. Transcranial doppler screening in a current cohort of children with sickle cell anemia: results from the DISPLACE Study. J Pediatr Hematol Oncol. Nov 1 2021;43(8):e1062-e1068. https://doi.org/10.1097/MPH.0000000000002103

MeSH terms

Actions
Actions
Actions
Actions

LinkOut - more resources

Full Text Sources
- Ovid Technologies, Inc.
- Wiley
Medical
- MedlinePlus Health Information

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Comment in

References

REFERENCES

MeSH terms

LinkOut - more resources

Full Text Sources

Medical