Comprehensive Care for Thalassemia (226)

11:30 am – 12:30 pm Saturday, September 15

1CNE  Thalassemia is becoming a more common diagnosis seen in pediatric hematology/oncology centers. The term thalassemia describes a group of very complex diseases that requires thorough, comprehensive care to improve outcomes and quality of life for these patients. A complicating factor is that patients often are immigrants or refugees with language and cultural barriers and other socioeconomic issues. The care of these patients require a multidisciplinary approach and a strong understanding of the pathophysiology, specific complications, current treatments, and new and emerging therapies.

Registered nurses (RNs) and nurse practitioners (NPs) have a unique role in establishing rapport with these patients. RNs and NPs have the opportunity to reduce complications, educate families, and overall improve their patients’ quality of life. There is currently a knowledge gap in nursing with regards to thalassemia care, which makes it more difficult for RNs and NPs to care for this population. The goal of this session is to outline the pathophysiology, explain the differences in types of thalassemia, and discuss how to provide comprehensive care including criteria for chronic transfusions, preventing and treating complications, and common issues with growth, development, and nutritional concerns. We will also briefly discuss common cultural issues, how this affects the disease process, and provide a brief overview of therapies on the horizon.