Social aspects of chronic transfusions: addressing social determinants of health, health literacy, and quality of life.

Abstract

Chronic monthly transfusions are a lifesaving preventative therapy for many patients with sickle cell disease; however, the burden of this therapy for patients and families is high. In the United States, there is overlap in the population affected by sickle cell disease and those with the greatest burden of social needs. Hematology providers caring for patients with SCD have an opportunity to screen for and mitigate social determinants of health, especially in those receiving chronic transfusion therapy given the frequent interactions with the healthcare system and increased demand on already potentially limited resources. Given the complexity of the treatment and medication regimens, providers caring for patients receiving chronic transfusions should implement universal strategies to minimize the impact of low health literacy, as this therapy imposes a significant demand on the health literacy skills of a family. Despite the social and literacy burden of this intervention, it is reassuring that quality of life is preserved as patients with SCD on chronic transfusion therapy often report higher health related quality of life than their peers receiving other disease modifying therapies.