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2018年马斯喀特省初级医疗保健中心婚前筛查试验结果异常者的态度及影响

Attitudes and impact among people with abnormal premarital screening test results in Muscat governorate's primary healthcare centers in 2018.

作者信息

Al Zeedi Manar Al Sanaa Ali, Al Abri Zahir Ghassan

机构信息

Ministry of Health, Muscat, Oman.

Sultanate of Oman, National Genetic Center, Muscat, Oman.

出版信息

J Community Genet. 2021 Jan;12(1):163-169. doi: 10.1007/s12687-020-00493-1. Epub 2020 Nov 21.

Abstract

Hereditary hemoglobin disorders are among the most common inherited diseases globally. In Oman, the burden of hereditary hemoglobin disorders has long been recognized as a major public health problem. In Oman, the prevalence of SCD ranges between 0.2 and 0.3% and of homozygous B-thalassemia was 0.07-0.08% while the prevalence of sickle cell trait and B-thalassemia trait reached up to 4.8-6% and 2-2.6% respectively. Glucose-6-phosphate dehydrogenase (G6PD) had a high prevalence in Oman, being 25% in males and 10% in females. The premarital screening and counseling (PMSC) program is an important preventative service for the most common hereditary hemoglobin disorders in Oman. The aim of this research is to study the attitude of those with abnormal premarital screening results and the impact of these results. This cross-sectional study was carried out in all primary healthcare centers in the Muscat governorate in 2018 to analyze abnormal premarital screening (PMS) tests results which mainly include sickle cell disease, thalassemia, and G6PD deficiency. Data were collected through telephone questionnaires with those with abnormal PMS test results. The questionnaire consisted of 3 parts investigating sociodemographic characteristics, attitudes toward PMS, and impact of the screening on participants. Of the 159 participants, 72.3% were between 20 and 29 years of age. Over two-thirds (71.5%) took PMS test while engaged. Consanguineous marriage was reported in 38.4% of married participants. The majority (94.3%) of participants believed PMSC to be important and (90%) agreed PMS should be obligatory before marriage. Half took the test as a personal decision while 17% complied with their spouse. Healthcare worker advice accounted for 21.4% of participants' decisions. Participant response to positive PMS results showed that 23% canceled their engagement, while 13.8% continued with marriage. Overall, 57.9% believed that PMS affected their lives positively. There is a relatively high favorable attitude toward PMSC. More effort is needed to raise public awareness regarding early PMS. Additionally, further genetic counseling before and after PMS testing is essential for the program's success.

摘要

遗传性血红蛋白疾病是全球最常见的遗传性疾病之一。在阿曼,遗传性血红蛋白疾病的负担长期以来一直被视为一个主要的公共卫生问题。在阿曼,镰状细胞病(SCD)的患病率在0.2%至0.3%之间,纯合子β地中海贫血的患病率为0.07 - 0.08%,而镰状细胞性状和β地中海贫血性状的患病率分别高达4.8 - 6%和2 - 2.6%。葡萄糖-6-磷酸脱氢酶(G6PD)在阿曼的患病率很高,男性为25%,女性为10%。婚前筛查与咨询(PMSC)项目是阿曼针对最常见遗传性血红蛋白疾病的一项重要预防服务。本研究的目的是调查婚前筛查结果异常者的态度以及这些结果所产生的影响。这项横断面研究于2018年在马斯喀特省的所有初级医疗保健中心开展,以分析婚前筛查(PMS)测试的异常结果,这些结果主要包括镰状细胞病、地中海贫血和G6PD缺乏症。通过电话问卷调查收集了PMS测试结果异常者的数据。问卷由三个部分组成,分别调查社会人口学特征、对PMS的态度以及筛查对参与者的影响。在159名参与者中,72.3%的年龄在20至29岁之间。超过三分之二(71.5%)的人在订婚时进行了PMS测试。38.4%的已婚参与者报告有近亲结婚情况。大多数(94.3%)参与者认为PMSC很重要,且90%的人同意婚前PMS应成为强制性要求。一半人将测试视为个人决定,而17%是听从配偶的意见。21.4%的参与者的决定是基于医护人员的建议。参与者对PMS阳性结果的反应表明,23%的人取消了婚约,而13.8%的人继续结婚。总体而言,57.9%的人认为PMS对他们的生活产生了积极影响。人们对PMSC的态度相对较为积极。需要做出更多努力来提高公众对早期PMS的认识。此外,在PMS测试前后进行进一步的遗传咨询对于该项目的成功至关重要。

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