A Pilot Study to Explore Knowledge, Attitudes, and Beliefs about-Sickle Cell Trait and Disease
A Pilot Study to Explore Knowledge, Attitudes, and Beliefs about-Sickle Cell Trait and Disease
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DOI：
10.1016/s0027-9684(15)31113-5
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发表时间：
2009-11-01
影响因子：
3.3
通讯作者：
Ross, Lainie Friedman
中科院分区：
文献类型：
--
作者：
Acharya, Kruti;Lang, Colleen Walsh;Ross, Lainie Friedman
简介：在美国，新生儿筛查程序普遍识别新生儿镰状细胞病（SCD）和杂合子携带者（镰状细胞性状[SCT]）。虽然有一个共识，披露SCT的父母，有有限的经验数据，是否以及如何将这些信息传递给carriers.Methods：在人的问卷调查进行了SCT的父母和一个孩子的父母与SCD或SCT检查的知识，态度，信念，和披露模式的父母有关SCT。对53名成年人进行了采访，其中一半（27）人有一个患有SCD的孩子：对镰状细胞遗传存在重大误解（平均得分，68%），但与没有患有SCD的孩子的父母相比，患有SCD的孩子的父母有更好的知识（78% vs 58%，p = .002）。受访者认为与SCT相关的耻辱感最小。除非有一个受影响的先证者，个体SCT很少接受咨询或教育以外的family.Conclusions：有显着的错误信息是什么意思是一个载体及其健康和生殖的影响。正式的专业咨询是罕见的，特别是对于那些没有受影响的先证者的家庭。提高咨询利用率和提高遗传素养的策略是必要的。
Introduction: In the United States, newborn screening programs universally identify newborns with sickle cell disease (SCD) and heterozygote carriers (sickle cell trait [SCT]). Although there is a consensus to disclose SCT to parents, there are limited empirical data about whether and how this information is transmitted to the carrier children.Methods: In-person questionnaires were administered to parents with SCT and parents of a child with either SCD or SCT to examine the knowledge, attitudes, beliefs, and disclosure patterns about SCT of parents.Results: Fifty-three adults were interviewed, half (27) of whom had a child with SCD: There was significant misunderstanding about sickle cell inheritance (mean score, 68%), but parents who have a child with SCD have better knowledge compared to those without a child with SCD (78% vs 58%, p = .002). Respondents perceive minimal stigma associated with SCT. Unless there is an affected proband, individuals with SCT rarely receive counseling or education outside of the family.Conclusions: There is significant misinformation about what it means to be a carrier and its health and reproductive implications. Formal professional counseling is rare, especially for those families without an affected proband. Strategies to increase the utilization of counseling and improve genetic literacy are necessary.