Knowledge and practice among parents of children with transfusion dependant anaemia on iron chelation who are receiving routine blood transfusion in Teaching Hospital Batticaloa

Abstract

Thalassemia is a genetic disease affecting red blood cells. It is characterised by the decreased or absent synthesis of the globin chain. Approximately 300,000 children are born globally with serious haemoglobin disorders like thalassemia and sickle cell disease each year. When considering Sri Lanka, the first case was reported in Sri Lanka in 1950 and according to the last survey, there are 1774 patients receiving treatment from 23 hospitals. Among them, 68% had disease type β-thalassemia major whereas 20% had HbE β-thalassemia and 2% had sickle βthalassemia. Current treatment options include blood transfusion, iron chelation, splenectomy, and haemopoietic stem cell transplantation. Transfusion-dependant thalassemia patients (TDT) receive blood transfusions routinely (2-5 weekly). When one unit of packed RBC is transfused, approximately 200 mg of iron is infused into the body. Iron overload causes various unwanted effects, detrimental to the health and wellbeing of the child and iron chelation therapy is crucial in TDT patients. Therefore, adequate understanding and correct practice of iron chelation by the caregivers become essential to achieve an optimal quality outcome. The objective of the study is to Assess the knowledge and practice among parents of children with transfusion-dependent anaemia on iron chelation. A descriptive cross-sectional study was conducted involving parents of children with transfusion-dependent anemia who are undergoing iron chelation therapy. Data were collected using a questionnaire, and statistical analysis of variables was performed using SPSS version 26. A total of 55 caregivers of children with transfusion-dependent anemia participated in our study, with mothers constituting the majority at 90.9%. Notably, 90.4% demonstrated adequate knowledge regarding iron chelation, while 92.4% exhibited sufficient knowledge of the proper handling techniques for the desferrioxamine infusion pump. The primary practical issue encountered during infusion pump use was identified as pump malfunction. Our study findings reveal that a majority of participants demonstrated familiarity with iron chelation drugs, and a substantial proportion exhibited knowledge concerning the proper administration of these medications. The results highlight that a significant portion of our study population possessed a commendable level of knowledge regarding iron chelation. However, a notably smaller number of participants knew about the complications associated with iron overload. Furthermore, our study identified that the majority of participants were proficient in handling needles and inserting them correctly. In the context of infusion pump proficiency, our assessment revealed that a majority of participants (92.7%) exhibited a satisfactory level of knowledge, while a moderate number (7.3%) displayed inadequate knowledge. Even when knowledge is substantial, it becomes apparent during the examination of patients' investigation reports that serum ferritin levels remain elevated and unaltered, potentially indicating factors such as poor compliance.