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J Genet Couns. 2015 Dec;24(6):945-51. doi: 10.1007/s10897-015-9830-z. Epub 2015 Apr 7.

Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan.

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Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan.
Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan.


Thalassemia is the leading haemoglobinopathy after sickle cell anemia that accounts for 1.5 % of the global population. In Pakistan, every 1-4 per 1000 infants suffers from Thalassemia. Regardless of being a population "at high risk" for Thalassemia major, evidence suggest that Pakistanis possess poor knowledge of the disease. The present study aimed to assess parents' accurate knowledge about Thalassemia disease at Afzaal Memorial Thalassemia Foundation in Karachi, Pakistan. A total of 172 parents of existing patients who were receiving regular blood transfusion from the center were included in the study. Parents' knowledge was assessed via a pre-tested and validated Thalassemia knowledge questionnaire. Findings show that 40 % of the sample showed lower knowledge scores about Thalassemia. Among different ethnic origins, Urdu speaking respondents showed a higher average score of correct knowledge about Thalassemia major (21.6 ± 4.41) as compared to the Siraiki (17.9 ± 4.48) and the Pathans (17.2 ± 4.34). These latter two ethnic groups also showed poor knowledge about Thalassemia minor. Generally parents provided correct answers about treatment of Thalassemia major. The findings suggest targeted interventions are required for high risk ethnic groups. Thalassemia education programs should be offered to extended family members of existing patients by all Thalassemia centers. High risk ethnic groups (Siraiki and Pathan) need rigorous interventions, and Thalassemia worker program should be introduced nationwide.


Awareness raising program; Ethnicity; Genetic counseling; Pakistan; Parental knowledge; Thalassemia knowledge; Thalassemia major; Thalassemia minor

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