Awareness among parents of children with thalassemia major from Western India

Abstract

Background: Parental awareness is the best way to prevent thalassemia in children. Parental knowledge regarding transfusion and chelation helps to improve the quality of life of children with thalassemia. Objective: To determine awareness among parents of children with thalassemia major regarding the transfusion practices and iron chelation. Materials and Methods: This cross-sectional study was conducted at the thalassemia ward of KT Children Hospital and PDU Medical College, Rajkot, Gujarat, India, from August to October 2012. Parents of children with thalassemia, receiving blood transfusion from PDU Medical College Blood Bank, were interviewed using a predesigned questionnaire. Informed verbal and written consent was obtained from these parents. Questions regarding duration of illness, awareness about blood screening, mode of transmission of the disease, and knowledge and practices about prevention and treatment of the disease were asked. Result: A total of 110 caretakers were questioned. A majority of them were from low socioeconomic class and 18% were illiterate. Among the parents of children undergoing transfusion, only 15.8% knew the importance of blood screening. Although all parents knew about iron overload, but only 48% of the children were receiving iron chelation therapy adequately. Despite of the fact that 15% were aware that thalassemia is an inherited disorder, family screening of sibling and antenatal diagnosis in subsequent pregnancies were done in only 5.8% and 5% respectively. Conclusion: Awareness of the parents regarding the disease was inadequate. General public and parents of children with thalassemia should be sensitized in this regard.