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2
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High School Knowledge and Attitudes towards Thalassemia in Southeastern Iran.伊朗东南部高中生对地中海贫血的认知与态度
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Awareness among parents of β-thalassemia major patients, regarding prenatal diagnosis and premarital screening.重型β地中海贫血患者父母对产前诊断和婚前筛查的认知。
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β-Thalassemia in Pakistan: a pilot program on prenatal diagnosis in Multan.巴基斯坦的β地中海贫血:木尔坦产前诊断试点项目
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Iron chelation therapy in the management of thalassemia: the Asian perspectives.地中海贫血症治疗中的铁螯合疗法:亚洲观点。
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城市人群对地中海贫血的认知与信念

Knowledge and Beliefs Regarding Thalassemia in an Urban Population.

作者信息

Ebrahim Sidra, Raza Anum Z, Hussain Mahnoor, Khan Arsalan, Kumari Lavita, Rasheed Ramsha, Mahmood Saad, Khatri Muneeza A, Bijoora Manaal, Zaheer Ramsha, Sattar Naveed, Sohail Wafa, Zakir Hareem, Jafry Fatima H, Memon Areeba, Anwer Shayan, Fatima Kaneez

机构信息

Internal Medicine, Dow Medical College and Civil Hospital, Karachi, PAK.

Surgery, Jinnah Medical and Dental College, Karachi, PAK.

出版信息

Cureus. 2019 Jul 29;11(7):e5268. doi: 10.7759/cureus.5268.

DOI:10.7759/cureus.5268
PMID:31576261
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6764615/
Abstract

BACKGROUND

Thalassemia is one of the most common genetic blood disorders in Asia. Consanguineous marriages and avoiding pre-marital and antenatal screening are common in Pakistan due to psychosocial, cultural, and religious factors. Few studies have investigated the beliefs regarding thalassemia, especially in a developing country. The aim of this study was to assess the knowledge, beliefs, and practices regarding thalassemia in an urban population.

METHOD

A cross-sectional descriptive study was conducted in the urban areas of Karachi, Pakistan over a period of six months during March 2016 through August 2016. Participants selected by representative sampling were interviewed face-to-face using a pre-designed, pre-tested questionnaire. The questionnaire was divided into four parts. The first part inquired about general demographic variables, while the second part assessed knowledge of the participant regarding thalassemia. The third and fourth parts were concerning the beliefs and practices regarding thalassemia. Data were entered and analyzed using the Statistical Package for Social Sciences (SPSS) Statistics, v. 24.0 (IBM SPSS Statistics, Armonk, NY).

RESULTS

Only 53% (n = 720) of the respondents had heard about thalassemia. The mean knowledge score was 5.8. The total possible score ranged between 0 - 12 with the higher scores indicating better knowledge. About three-quarters (70%) of the sample did not know that an individual can be a carrier of thalassemia. Less than half (38%) of the participants viewed premarital screening for thalassemia as necessary, with only 10% agreeing that thalassemia carriers should not marry. There was no pre-marriage counseling done in 98% of the families.  Conclusion: Our study highlights the prevalence of numerous myths and a low level of knowledge regarding thalassemia in an urban population of Pakistan.

摘要

背景

地中海贫血是亚洲最常见的遗传性血液疾病之一。由于社会心理、文化和宗教因素,近亲结婚以及不进行婚前和产前筛查在巴基斯坦很常见。很少有研究调查关于地中海贫血的认知,尤其是在一个发展中国家。本研究的目的是评估城市人口中关于地中海贫血的知识、认知和行为。

方法

2016年3月至2016年8月期间,在巴基斯坦卡拉奇市区进行了一项为期六个月的横断面描述性研究。通过代表性抽样选择的参与者使用预先设计、预先测试的问卷进行面对面访谈。问卷分为四个部分。第一部分询问一般人口统计学变量,而第二部分评估参与者关于地中海贫血的知识。第三和第四部分涉及关于地中海贫血的认知和行为。数据使用社会科学统计软件包(SPSS)Statistics v. 24.0(IBM SPSS Statistics,纽约州阿蒙克)录入和分析。

结果

只有53%(n = 720)的受访者听说过地中海贫血。平均知识得分是5.8。总可能得分在0 - 12分之间,得分越高表明知识越好。大约四分之三(70%)的样本不知道个体可能是地中海贫血携带者。不到一半(38%)的参与者认为婚前进行地中海贫血筛查是必要的,只有10%的人同意地中海贫血携带者不应结婚。98%的家庭没有进行婚前咨询。结论:我们的研究突出了巴基斯坦城市人口中关于地中海贫血的众多误解的流行以及知识水平较低的情况。