Blood Transfusion: Knowledge, Perspectives, and Experiences of Individuals with Sickle Cell Disease

Patient voice and perspective were needed to inform effective, comprehensive strategies for reducing preventable transfusion-associated complications. This report presents the results of interviews with sickle cell disease (SCD) patients and implications for strategies to reduce transfusion complications in this population. Twenty-two participants were recruited from 2 comprehensive SCD treatment centers in Georgia and interviewed regarding knowledge about transfusions and potential complications, attitudes about data storage and sharing, and the transfusion experience. Participants had general knowledge of physiology, blood products, and blood transfusions, including knowing the risk of complications, but varied in comprehension of complex health information and level of misinformation. Patients also varied in preferences for how they would like their transfusion information stored. They saw both advantages and disadvantages to wallet cards, smartphone applications, and registries. There is a need for a patient-centered approach that involves transfusion education and shared decision-making. Education should range from essential and simple to more in-depth to accommodate varying education and comprehension levels. Multiple tracking methods should be offered to store sensitive patient information.