AWARENESS OF PARENTS REGARDING BETA THALASSEMIA MAJOR DISEASE

OBJECTIVE: To determine the level of awareness among the parents of children with Thalassemia major regarding prevention, treatment options and complications of disease. METHODS: This multi-centric KAP study was conducted in Department of pediatrics Peshawar Medical College, Fatimid thalassemia Centre and Hamza thalassemia center Peshawar from June 2011 till December 2011.Total of 200 parents were selected as non-probability consecutive sampling. All the data was collected on structured proforma and analyzed on SPSS version 20. RESULT: Out of the 200 patients who attended the transfusion centers, 76 (38%) were accompanied by mothers while 124(62%) were accompanied by their fathers. One hundred and twenty two parents were having no formal education, 56 were matriculate, 18 were Bachelor and 4 were having master degree. All the 200 parents (100%) knew that this disease need repeated blood transfusion and blood should be screened against hepatitis B and HIV. Although 68(34%) parents already knew that they have positive family history of thalassemia, 58 parents (85.2%) had not screened themselves while 10 parents (14.4%) screened themselves. Although 74% had knowledge about prenatal screening but only 11% considered it acceptable religiously and none of the couple opted for it. One hundred and eighty four (92%) parents were aware that iron over load is a complication of thalassemia while 16 (8%) had no knowledge regarding this complication. CONCLUSION: Parents knowledge regarding beta-thalassemia was appropriate but there is a lot of space for further improvement in the existing attitudes and practices of parents of children with thalassemia