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对阿什肯纳兹犹太人群体进行携带者筛查的知识、态度及障碍:佛罗里达的经验:犹太遗传性疾病的教育与障碍评估

Knowledge, attitudes, and barriers to carrier screening for the Ashkenazi Jewish panel: a Florida experience : Education and Barriers assessment for Jewish Genetic Diseases.

作者信息

Warsch Jessica R L, Warsch Sean, Herman Elizabeth, Zakarin Lauren, Schneider Adele, Hoffman Jodi, Wasserman Deborah, Barbouth Deborah

机构信息

Department of Medicine, University of Miami Miller School of Medicine, Miami, FL, USA.

出版信息

J Community Genet. 2014 Jul;5(3):223-31. doi: 10.1007/s12687-013-0179-4. Epub 2014 Jan 12.

Abstract

The knowledge, attitudes, and barriers to Jewish genetic diseases (JGDs) and screening and their relative importance in reproductive decision-making were assessed in a population-based sample of Ashkenazi Jewish young adults in Florida. These adults attended educational screening fairs hosted by The Victor Center for the Prevention of Jewish Genetic Diseases at the University of Miami. Parametric and nonparametric tests were used as appropriate to analyze data from a single group pretest/posttest design. Four hundred twelve individuals (mean age = 24.9; 54.7 % female, 45.3 % male) completed the questionnaires. Participants' level of knowledge increased from pre- to post-intervention (81.4 vs. 91.0 %; p < 0.0001). Concern about the possibility of being a carrier of a JGD was significantly higher after an educational session (5-point Likert scale mean difference = 0.45; p < 0.0001), as was their level of concern regarding having an affected child (mean difference = 0.20; p < 0.0001). The number of participants who agreed or strongly agreed that the test results would not have any influence on their reproductive behavior was lower after the session (17.2 vs. 20.8 %; p < 0.0001). This study demonstrates that an educational carrier screening program increased knowledge and elucidated awareness of the attitudes and barriers toward JGDs and carrier screening.

摘要

在佛罗里达州的一个基于人群的阿什肯纳兹犹太裔年轻成年人样本中,评估了对犹太遗传性疾病(JGDs)及其筛查的知识、态度、障碍,以及它们在生殖决策中的相对重要性。这些成年人参加了迈阿密大学维克托犹太遗传性疾病预防中心举办的教育筛查活动。使用参数检验和非参数检验对单组前后测设计的数据进行了适当分析。412名个体(平均年龄 = 24.9岁;女性占54.7%,男性占45.3%)完成了问卷调查。参与者的知识水平在干预前后有所提高(81.4%对91.0%;p < 0.0001)。在参加教育课程后,对成为JGD携带者可能性的担忧显著增加(5点李克特量表平均差异 = 0.45;p < 0.0001),对生育患病孩子的担忧程度也有所增加(平均差异 = 0.20;p < 0.0001)。在课程结束后,同意或强烈同意检测结果不会对其生殖行为产生任何影响的参与者人数减少(17.2%对20.8%;p < 0.0001)。这项研究表明,一项教育性携带者筛查计划提高了知识水平,并阐明了对JGDs和携带者筛查的态度及障碍的认识。

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