caa a22 4500 605544344 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20151201xx s 000 0 eng 10.1007/s10897-015-9830-z doi (NATIONALLICENCE)springer-10.1007/s10897-015-9830-z Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan [Elektronische Daten] [Humaira Maheen, Farrukh Malik, Barera Siddique, Asim Qidwai] 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. National Society of Genetic Counselors, Inc., 2015 Thalassemia major nationallicence Parental knowledge nationallicence Thalassemia minor nationallicence Ethnicity nationallicence Awareness raising program nationallicence Thalassemia knowledge nationallicence Genetic counseling nationallicence Pakistan nationallicence Maheen Humaira Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut Malik Farrukh Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut Siddique Barera Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut Qidwai Asim Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 945-951 1059-7700 24:6<945 2015 24 10897 https://doi.org/10.1007/s10897-015-9830-z text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9830-z text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Maheen Humaira Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut NATIONALLICENCE 700 1- Malik Farrukh Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut NATIONALLICENCE 700 1- Siddique Barera Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut NATIONALLICENCE 700 1- Qidwai Asim Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 945-951 1059-7700 24:6<945 2015 24 10897