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镰状细胞性状状态的知识缺乏:护士能提供帮助吗?

Knowledge Deficit of Sickle Cell Trait Status: Can Nurses Help?

作者信息

Arhin Afua O

机构信息

School of Nursing, Fayetteville State University, Fayetteville, North Carolina.

出版信息

Crit Care Nurs Q. 2019 Apr/Jun;42(2):198-201. doi: 10.1097/CNQ.0000000000000254.

Abstract

Sickle cell disease and sickle cell trait are identified through universal newborn screening, which has been implemented in all hospitals across the United States since the 1970s. Yet, studies report that only 16% of Americans with sickle cell trait know their status. Despite these striking statistics, there appears to be no standardized methods for reporting positive sickle cell trait results of newborn screening to doctors or families of affected persons. This article will demonstrate how current literature supports the gaps in knowledge of trait status and its implications as well as knowledge deficit of inheritance patterns of prospective parents. The article will also elucidate how knowledge deficit in this subject adversely affects primary prevention strategies including genetic counseling. Primary prevention of sickle cell disease is a public health area that can be championed by registered nurses who have the tools and experiences to effectively handle case management and patient education.

摘要

镰状细胞病和镰状细胞性状通过新生儿普遍筛查来识别,自20世纪70年代以来,美国所有医院都已开展此项筛查。然而,研究报告称,只有16%的携带镰状细胞性状的美国人知道自己的状况。尽管有这些惊人的数据,但似乎没有标准化的方法将新生儿筛查的镰状细胞性状阳性结果告知医生或受影响者的家属。本文将说明当前文献如何支持性状状态知识方面的差距及其影响,以及准父母对遗传模式的知识缺乏情况。本文还将阐明该主题的知识缺乏如何对包括遗传咨询在内的一级预防策略产生不利影响。镰状细胞病的一级预防是一个公共卫生领域,注册护士可以凭借其有效处理病例管理和患者教育的工具及经验来推动这一领域的发展。

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