Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan
Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan
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DOI：
10.1007/s10897-015-9830-z
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发表时间：
2015-12-01
影响因子：
1.9
通讯作者：
Qidwai, Asim
中科院分区：
文献类型：
--
作者：
Maheen, Humaira;Malik, Farrukh;Qidwai, Asim
地中海贫血是仅次于镰状细胞性贫血的主要血红蛋白病，占全球人口的 1.5%。在巴基斯坦，每 1000 名婴儿中就有 1-4 人患有地中海贫血。尽管巴基斯坦人是重型地中海贫血的“高危人群”，但有证据表明巴基斯坦人对该疾病的了解甚少。本研究旨在评估巴基斯坦卡拉奇阿夫扎尔地中海贫血纪念基金会家长对地中海贫血疾病的准确了解。该研究共纳入了 172 名正在接受该中心定期输血的现有患者的父母。通过预先测试和验证的地中海贫血知识调查问卷评估家长的知识。调查结果显示，40% 的样本对地中海贫血的了解得分较低。在不同种族中，乌尔都语受访者对重型地中海贫血的正确知识平均得分 (21.6 +/- 4.41) 高于西莱基人 (17.9 +/- 4.48) 和帕坦人 (17.2 +/- 4.34)。后两个族群对轻型地中海贫血的了解也很贫乏。一般来说，家长对重型地中海贫血的治疗提供了正确的答案。研究结果表明，需要对高危族群采取有针对性的干预措施。所有地中海贫血中心都应向现有患者的大家庭成员提供地中海贫血教育计划。高危族群（Siraiki 和 Pathan）需要严格干预，地中海贫血工作者计划应在全国范围内推行。
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.