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

Publication ,  Journal Article
Kanter, J; Smith, WR; Desai, PC; Treadwell, M; Andemariam, B; Little, J; Nugent, D; Claster, S; Manwani, DG; Baker, J; Strouse, JJ; Osunkwo, I ...
Published in: Blood Adv
August 25, 2020

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.

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Published In

Blood Adv

DOI

EISSN

2473-9537

Publication Date

August 25, 2020

Volume

4

Issue

16

Start / End Page

3804 / 3813

Location

United States

Related Subject Headings

  • United States
  • Humans
  • Hematologic Diseases
  • Health Services Accessibility
  • Child
  • Anemia, Sickle Cell
  • Adult
  • 3201 Cardiovascular medicine and haematology
 

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Kanter, J., Smith, W. R., Desai, P. C., Treadwell, M., Andemariam, B., Little, J., … Lanzkron, S. (2020). Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv, 4(16), 3804–3813. https://doi.org/10.1182/bloodadvances.2020001743
Kanter, Julie, Wally R. Smith, Payal C. Desai, Marsha Treadwell, Biree Andemariam, Jane Little, Diane Nugent, et al. “Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects.Blood Adv 4, no. 16 (August 25, 2020): 3804–13. https://doi.org/10.1182/bloodadvances.2020001743.
Kanter J, Smith WR, Desai PC, Treadwell M, Andemariam B, Little J, et al. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv. 2020 Aug 25;4(16):3804–13.
Kanter, Julie, et al. “Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects.Blood Adv, vol. 4, no. 16, Aug. 2020, pp. 3804–13. Pubmed, doi:10.1182/bloodadvances.2020001743.
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. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv. 2020 Aug 25;4(16):3804–3813.

Published In

Blood Adv

DOI

EISSN

2473-9537

Publication Date

August 25, 2020

Volume

4

Issue

16

Start / End Page

3804 / 3813

Location

United States

Related Subject Headings

  • United States
  • Humans
  • Hematologic Diseases
  • Health Services Accessibility
  • Child
  • Anemia, Sickle Cell
  • Adult
  • 3201 Cardiovascular medicine and haematology