Medical and Non-medical Costs of Sickle Cell Disease and Treatments from a US Perspective: A Systematic Review and Landscape Analysis

Zachary Baldwin, Boshen Jiao, Anirban Basu, Joshua Roth, M. A. Bender, Zizi Elsisi, Kate M. Johnson, Emma Cousin, Scott D. Ramsey and Beth Devine ()
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Zachary Baldwin: University of Washington
Boshen Jiao: University of Washington
Anirban Basu: University of Washington
M. A. Bender: University of Washington and Clinical Research Division, Fred Hutchinson Cancer Research Center
Zizi Elsisi: University of Washington
Kate M. Johnson: University of Washington
Emma Cousin: University of Washington
Scott D. Ramsey: University of Washington
Beth Devine: University of Washington

PharmacoEconomics - Open, 2022, vol. 6, issue 4, No 1, 469-481

Abstract: Abstract Background Sickle cell disease (SCD) is a complex genetic disorder that manifests in infancy and progresses throughout life in the form of acute and chronic complications. As the upfront costs of potentially curative, genetic therapies will likely be high, an assessment and comprehensive characterization of the medical and non-medical cost burden will inform future decision making. Objective We sought to systematically summarize the existing literature surrounding SCD medical and non-medical costs. Methods We searched MEDLINE and EMBASE (2008–2020) and identified US-based studies that detailed medical or non-medical costs. Eligible studies provided empirical estimates about any aspect of cost or SCD individuals of all ages and their caregivers. Study quality was assessed using the Newcastle–Ottawa Scale, and costs were adjusted to 2019 US$. Results Search queries returned 479 studies, with 342 from medical burden searches and 137 from non-medical burden searches, respectively. Herein, we report the results of the 40 studies that contained relevant cost information: 39 detailed medical costs and 1 detailed non-medical costs. Costs were higher for SCD patients when compared with non-SCD individuals (cost difference range: $6636–$63,436 annually). The highest medical cost component for SCD patients was inpatient ($11,978–$59,851 annually), followed by outpatient and then pharmacy. No studies characterized the cost burden throughout the lifetime disease trajectory of an SCD individual, and no studies captured caregiver or productivity costs. Conclusion Our results reveal an incomplete characterization of medical and non-medical costs within SCD. A deeper understanding of the medical and non-medical cost burden requires completion of additional studies that capture the burden across the patient’s lifetime, in addition to expression of the impact of existing and emergent health technologies on disease trajectory.

Date: 2022
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DOI: 10.1007/s41669-022-00330-w

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