Caregivers' Perception of iron overload and its implications

Abstract

BACKGROUND: Although frequently diagnosed in our region, transfusion-dependent thalassemia (TDT) often remains a poorly managed disease. This is due to a lack of awareness of the long-term effect of iron overload among thalassemic patients. This study aimed to examine the unmet needs of TDT patients and provide insight into achieving better care. METHODS: We conducted a cross-sectional study of 50 caregivers of heavily transfused thalassemia and sickle cell anemia (SCA) patients. The participants were recruited during their visit to the pediatric hematology clinic or daycare unit between September 2018 and May 2019. The researchers administered a questionnaire to assess the awareness of iron overload and compliance with its management in TDT and SCA. RESULTS: Most participant caregivers of children with TDT and SCA had a low level of awareness about the most critical complication of TDT and SCA, which is iron overload. Furthermore, two-thirds of the participants did not appreciate the seriousness of iron overload nor its potential complications. Moreover, the participants reported that their health-care providers rarely or occasionally discuss iron overload or its management. Furthermore, they reported that compliance with health-care appointments and iron chelation therapy was suboptimal. CONCLUSION: Caregivers of TDT and SCA patients reported a low level of knowledge of the magnitude of iron overload, its management, and expected complications if not treated appropriately. Health education on iron overload is critical to ensure appropriate compliance and consequently, control of such disease. The focus must be shifted from giving blood to eliminating excess iron among TDT patients.

Keywords

• caregivers' perception
• iron overload
• thalassemia