title: Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan.
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.
authors.affiliation: Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan.
authors.forename: Humaira
authors.initials: H
authors.lastname: Maheen
authors.affiliation: Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan.
authors.forename: Farrukh
authors.initials: F
authors.lastname: Malik
authors.affiliation: Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan.
authors.forename: Barera
authors.initials: B
authors.lastname: Siddique
authors.affiliation: Afzaal Memorial Thalassemia Foundation (AMTF), 1/C, Shahrah-e-Jhangir, Block 10, FB Area, Karachi, Pakistan. oncohaem@hotmail.com.
authors.forename: Asim
authors.identifier: http://orcid.org/0000-0002-8298-5047
authors.initials: A
authors.lastname: Qidwai
mesh_terms: D000328:Adult; D005260:Female; D005817:Genetic Counseling / Q000379:methods*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D010154:Pakistan; D010290:Parents / Q000523:psychology*; D011296:Prenatal Diagnosis / Q000523:psychology*; D012307:Risk Factors; D013789:Thalassemia / Q000175:diagnosis* / Q000523:psychology*; D055815:Young Adult; D017086:beta-Thalassemia / Q000175:diagnosis / Q000523:psychology
keywords: Awareness raising program; Ethnicity; Genetic counseling; Pakistan; Parental knowledge; Thalassemia knowledge; Thalassemia major; Thalassemia minor
references.citation: Ann N Y Acad Sci. 2005;1054:18-24
references.pmid: 16339647
references.citation: Ann N Y Acad Sci. 2010 Aug;1202:188-96
references.pmid: 20712792
references.citation: J Coll Physicians Surg Pak. 2012 Apr;22(4):218-21
references.pmid: 22482376
references.citation: Prenat Diagn. 2001 Jun;21(6):448-51
references.pmid: 11438947
references.citation: Prenat Diagn. 2000 May;20(5):378-83
references.pmid: 10820404
references.citation: Soc Sci Med. 2006 Nov;63(10):2661-73
references.pmid: 16901596
references.citation: J Genet Couns. 2005 Oct;14(5):365-76
references.pmid: 16195943
references.citation: J Pak Med Assoc. 1995 Mar;45(3):66-70
references.pmid: 7596015
references.citation: N Engl J Med. 2002 Oct 10;347(15):1162-8
references.pmid: 12374877
references.citation: BMJ. 2004 Nov 13;329(7475):1134-7
references.pmid: 15539666
references.citation: Prenat Diagn. 1997 May;17(5):423-8
references.pmid: 9178316
references.citation: J Pak Med Assoc. 2000 Sep;50(9):293-6
references.pmid: 11043018
references.citation: Ann N Y Acad Sci. 2005;1054:11-7
references.pmid: 16339646
references.citation: J Coll Physicians Surg Pak. 2007 Mar;17(3):144-7
references.pmid: 17374299
references.citation: J Pak Med Assoc. 2008 Nov;58(11):621-4
references.pmid: 19024134
references.citation: Soc Sci Med. 1998 Dec;47(11):1639-51
references.pmid: 9877334
references.citation: BMJ. 1998 Sep 19;317(7161):761-2
references.pmid: 9740557
references.citation: Int J Mol Epidemiol Genet. 2011;2(4):403-8
references.pmid: 22200002
references.citation: Sultan Qaboos Univ Med J. 2009 Dec;9(3):305-10
references.pmid: 21509314
references.citation: J Obstet Gynaecol Can. 2008 Oct;30(10 ):950-959
references.pmid: 19038079
references.citation: Prenat Diagn. 2006 Mar;26(3):248-57
references.pmid: 16475227