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

Journal Article (Journal Article)

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.

Full Text

Duke Authors

Cited 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

Published Date

  • August 25, 2020

Published In

  • Blood Adv

Volume / Issue

  • 4 / 16

Start / End Page

  • 3804 - 3813

PubMed ID

  • 32785684

Pubmed Central ID

  • PMC7448595

Electronic International Standard Serial Number (EISSN)

  • 2473-9537

Digital Object Identifier (DOI)

  • 10.1182/bloodadvances.2020001743


  • eng

Conference Location

  • United States