非裔美国女性对镰状细胞病的社区认知不足。
Inadequate community knowledge about sickle cell disease among African-American women.
作者信息
Boyd Jessica H, Watkins André R, Price Cynthia L, Fleming Faye, DeBaun Michael R
机构信息
Department of Pediatrics, Division of Genetics, Washington University School of Medicine, St. Louis, MO 63108, USA.
出版信息
J Natl Med Assoc. 2005 Jan;97(1):62-7.
BACKGROUND
Federal legislation was passed in 1972 initiating genetic screening and community education about sickle cell disease (SCD). Few assessments have examined the impact of these programs. The aim of this study is to assess existing knowledge about SCD among African-American women in St. Louis, MO.
METHODS
We conducted a cross-sectional telephone survey of African-American women, 18-30 years of age. Participants were recruited through random-digit dialing in six ZIP codes with greater than 75% African-American residents. The survey contained questions exploring four content domains about SCD: general knowledge, genetics, management and educational resources.
RESULTS
A total of 264 women were contacted; 30% were unable to complete the survey and participate further because they were unaware of SCD. One-hundred-sixty-two women met eligibility criteria, agreed to be surveyed and were included in the study. Ninety-one percent of the participants believed that SCD was a hereditary blood disorder, but only 9.3% understood the inheritance pattern. Eleven percent of the women were unaware of their sickle cell trait status. Most women recognized pain (94%), infections (80%) and strokes (40%) as complications of SCD.
CONCLUSION
New strategies are needed to enhance awareness of SCD among African-American women of childbearing age.
背景
1972年通过了联邦立法，启动了关于镰状细胞病（SCD）的基因筛查和社区教育。很少有评估研究这些项目的影响。本研究的目的是评估密苏里州圣路易斯市非裔美国女性对SCD的现有认知。
方法
我们对18至30岁的非裔美国女性进行了一项横断面电话调查。通过在六个邮政编码区域进行随机数字拨号招募参与者，这些区域的非裔美国居民比例超过75%。该调查包含了探索关于SCD四个内容领域的问题：一般知识、遗传学、管理和教育资源。
结果
总共联系了264名女性；30%的女性因不了解SCD而无法完成调查并进一步参与。162名女性符合资格标准，同意接受调查并被纳入研究。91%的参与者认为SCD是一种遗传性血液疾病，但只有9.3%的人了解遗传模式。11%的女性不知道自己的镰状细胞性状状态。大多数女性认识到疼痛（94%）、感染（80%）和中风（40%）是SCD的并发症。
结论
需要新的策略来提高育龄非裔美国女性对SCD的认识。
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