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scientific articles

Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects

key information

source: Blood Advances

year: 2020

authors: Julie Kanter, Wally R Smith, Payal C. Desai, Marsha Treadwell, Biree Andemariam, Jane Little, Diane Nugent, Susan Claster, Deepa G. Manwani, Judith Baker, John J Strouse , Ifeyinwa Osunkwo, Rosalyn W Stewart, Allison King, Lisa M Shook , John D Roberts , Sophie Lanzkron


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.

organization: The University of Alabama at Birmingham, USA; Virginia Commonwealth University, USA; The Ohio State University Wexner Medical Center, USA; University of California San Francisco Benioff Children's Hospitals, USA; University of Connecticut Health, USA; The University of North Carolina at Chapel Hill, USA; Center for Inherited Blood Disorders, USA; Children's Hospital of Orange County (CHOC), USA; Martin Luther King, Jr. (MLK) Outpatient Center, USA; Albert Einstein College of Medicine, USA; Duke University, USA; The Levine Cancer Institute, USA; Johns Hopkins University, USA; Washington University School of Medicine in St. Louis, USA; Cincinnati Children's Hospital Medical Center, USA; University of Cincinnati, USA; Yale New Haven Health, USA

DOI: 10.1182/bloodadvances.2020001743

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