Abstract
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.
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Conflict of Interest
All authors: Humaira Maheen, Farrukh Malick, Barera Siddique and Dr. Asim Qidwai have no conflict of interest.
Disclosure of Human Rights and Informed Consent
All procedures performed in study involving human participants were in accordance with the ethical standards of the institutional research ethics committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Also informed consent was obtained from all individual participants included in the study
Animal Studies
No animal studies were carried out by the authors for this article.
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Maheen, H., Malik, F., Siddique, B. et al. Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan. J Genet Counsel 24, 945–951 (2015). https://doi.org/10.1007/s10897-015-9830-z
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DOI: https://doi.org/10.1007/s10897-015-9830-z