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Health State Utilities for Sickle Cell Disease: A Catalog Prepared From a Systematic Review

The Comparative Health Outcomes, Policy, and Economics Institute, University of Washington, Seattle, WA, USA. The Comparative Health Outcomes, Policy, and Economics Institute, University of Washington, Seattle, WA, USA; Department of Health Services, University of Washington, Seattle, WA, USA. The Comparative Health Outcomes, Policy, and Economics Institute, University of Washington, Seattle, WA, USA; Hutchinson Institute for Cancer Outcomes Research and Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA, USA. Hutchinson Institute for Cancer Outcomes Research and Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA, USA. Department of Pediatrics, University of Washington and Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA. Department of Pharmacy, University of Washington, Seattle, WA, USA. The Comparative Health Outcomes, Policy, and Economics Institute, University of Washington, Seattle, WA, USA; Department of Health Services, University of Washington, Seattle, WA, USA; Department of Biomedical Informatics, University of Washington, Seattle, WA, USA. Electronic address: bdevine@uw.edu.

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research. 2022;25(2):276-287
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Abstract
OBJECTIVES Sickle cell disease (SCD) is a complex, chronic condition that impairs health-related quality of life of affected individuals and their caregivers. As curative therapies emerge, comprehensive cost-effectiveness models will inform their value. These models will require descriptions of health states and their corresponding utility values that accurately reflect health-related quality of life over the disease trajectory. The objectives of this systematic review were to develop a catalog of health state utility (HSU) values for SCD, identify research gaps, and provide future directions for preference elicitation. METHODS Records were identified through searches of PubMed and Embase, Tufts Medical Center Cost-Effectiveness Analysis Registry, reference lists of relevant articles, and consultation with SCD experts (2008-2020). We removed duplicate records and excluded ineligible studies. For included studies, we summarized the study characteristics, methods used for eliciting HSUs, and HSU values. RESULTS Five studies empirically elicited utilities using indirect methods (EQ-5D) (n = 3) and Short Form-6 Dimension (n = 2); these represent health states associated with general SCD (n = 1), SCD complications (n = 2), and SCD treatments (n = 3). Additionally, we extracted HSUs from 7 quality-adjusted life-years-based outcome research studies. The HSU among patients with general SCD without specifying complications ranged from 0.64 to 0.887. Only 36% of the HSUs used in the quality-adjusted life-year-based outcomes research studies were derived from individuals with SCD. No study estimated HSUs in caregivers. CONCLUSIONS There is a dearth of literature of HSUs for use in SCD models. Future empirical studies should elicit a comprehensive set of HSUs from individuals with SCD and their caregivers.
Study details
Study Design : Systematic Review
Language : eng
Credits : Bibliographic data from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine