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Updated: Apr 27, 2026

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust
Shawn M Bediako1, Sophie Lanzkron2, Marie Diener-West3
1University of Maryland, Baltimore County, USA bediako@umbc.edu.
Abstract:
Research about the influence of stigma on health outcomes in sickle cell disease is limited. We administered the recently developed Measure of Sickle Cell Stigma to 262 patients in the United States. The Measure of Sickle Cell Stigma yielded very good internal consistency and four interpretable factors. Significant associations among stigma, pain-related healthcare utilization, and perceived disease severity were observed for three of the four stigma factors (F range = 2.78-5.44). The Measure of Sickle Cell Stigma appears to be a useful tool for measuring disease-specific stigma among adults living with sickle cell disease, and further assessment of its clinical utility is warranted.
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