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Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects.

Authors :
Kanter J
Smith WR
Desai PC
Treadwell M
Andemariam B
Little J
Nugent D
Claster S
Manwani DG
Baker J
Strouse JJ
Osunkwo I
Stewart RW
King A
Shook LM
Roberts JD
Lanzkron S
Source :
Blood advances [Blood Adv] 2020 Aug 25; Vol. 4 (16), pp. 3804-3813.
Publication Year :
2020

Abstract

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. It is a medically and socially complex, multisystem illness that affects individuals throughout the lifespan. Given improvements in care, most children with SCD survive into adulthood. However, access to adult sickle cell care is poor in many parts of the United States, resulting in increased acute care utilization, disjointed care delivery, and early mortality for patients. A dearth of nonmalignant hematology providers, the lack of a national SCD registry, and the absence of a centralized infrastructure to facilitate comparative quality assessment compounds these issues. As part of a workshop designed to train health care professionals in the skills necessary to establish clinical centers focused on the management of adults living with SCD, we defined an SCD center, elucidated required elements of a comprehensive adult SCD center, and discussed different models of care. There are also important economic impacts of these centers at an institutional and health system level. As more clinicians are trained in providing adult-focused SCD care, center designation will enhance the ability to undertake quality improvement and compare outcomes between SCD centers. Activities will include an assessment of the clinical effectiveness of expanded access to care, the implementation of SCD guidelines, and the efficacy of newly approved targeted medications. Details of this effort are provided.<br /> (© 2020 by The American Society of Hematology.)

Details

Language :
English
ISSN :
2473-9537
Volume :
4
Issue :
16
Database :
MEDLINE
Journal :
Blood advances
Publication Type :
Academic Journal
Accession number :
32785684
Full Text :
https://doi.org/10.1182/bloodadvances.2020001743