Khalid Hassan, Khalid Hassan, Muhammad Aslam, Nadeem Ikram.
Parental knowledge and awareness in cases of Thalassemia Major.
J Pak Inst Med Sci Jan ;13(1):623-6.

Parental knowledge and awareness about various aspects of beta-thalassaemia is of a great importance not only for the thalassemic child himself, but also for the prevention of thalassemia major in the family. In the present study, we interviewed parents of 100 randomly selected patients of thalassaemia major who were under transfusion management at Pakistan Thalassaemia Welfare Centre, PMA House, Rawalpindi, to assess their knowledge about the disease. Parents of about half the children were unaware that /3-thalassaemia exists in a carrier state (thalassaemia minor), that the disease is transmitted genetically from both the parents and that thalassaemia can be diagnosed pre-natally. Eighty percent did not know that marriage in the same family increased the risk of genetic transmission. Another 80% were not aware of the importance of screening of transfused blood for HbsAg, HCV and HIV infection. Only 5% of children were found adequately iron chelated. The remaining 95%were given desferrioxamine randomly. The main reason of this inadequacy was ignorance (60%) or ignorance as well as economic constraints (35%). It was concluded that the parental knowledge about /3-thalassaemia was far from adequate in the population studied.

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