EFFECTS OF CONSULTATION AND SUPPLEMENTAL EDUCATION FOR THALASSEMIA PATIENTS ON EFFECTIVE TREATMENT AND CARE

Abstract

Thalassemia is a genetic disorder that is characterized by abnormal hemoglobin within red blood cells of the body. If not diagnosed early and treated with proper care, this disorder is fatal. Once considered rare, this disorder’s rise in prevalence is now of concern to many health professionals because it does not receive the same level of attention as other, more common blood disorders. Due to its chronic treatment course and recent advancements in treatment, thalassemia still remains primarily a pediatric disorder not having many cases of patients living into adulthood at this point in time [1]. Seeing this shortcoming in thalassemia advocacy we find it useful to take certain steps to bring more public awareness of it. We hope to share information about this debilitating disorder, its management/ treatment course and most importantly, its prevention through genetic testing. We conducted a patient quality improvement study at the Pediatric Hematology/Oncology/BMT clinic at Banner University Medical Center Tucson, AZ to assess the effectiveness of consultations and supplemental education on the treatment and care of thalassemia patients. The focus of the project revolved around patients with the most prominent thalassemias, beta and alpha.