Treadwell Marsha J, McClough Lakenya, Vichinsky Elliott
Children's Hospital and Research Center at Oakland, 747 52nd St., Oakland, CA, USA.
J Natl Med Assoc. 2006 May;98(5):704-10.
To evaluate knowledge, perceptions and the effectiveness of different sources of information about sickle cell trait (SCT) and sickle cell disease (SCD); to determine individual knowledge of SCT status.
28 individuals participated in three focus groups (healthcare providers, people affected by SCD or SCT, and community members). Surveyors interviewed 282 respondents within their neighborhoods.
Common themes across the focus groups included the limited general awareness of SCD and SCT, the emphasis on the benign nature of SCT rather than on future implications, and the need for public health education campaigns about SCD and SCT involving media strategies. The majority of community survey respondents (n = 243, 86.2%) had correct general knowledge about the genetic basis and severity of SCD, but only 16% (n = 45) knew their own trait status. When respondents had received information about SCD from friends and acquaintances, they were three times more likely to know their SCT status, compared with respondents who had not received information from a personal source (p < 0.01).
Despite a screening history in the 1970s fraught with controversy, sickle cell disease management and detection can be a model for the empowerment of communities in making informed decisions about theirs and their families' futures, given the burgeoning of genetic information.
评估关于镰状细胞性状（SCT）和镰状细胞病（SCD）的不同信息来源的知识、认知及有效性；确定个体对SCT状态的了解情况。
28人参与了三个焦点小组（医疗服务提供者、受SCD或SCT影响的人群以及社区成员）。调查员在邻里范围内对282名受访者进行了访谈。
各焦点小组的共同主题包括对SCD和SCT的总体认识有限、强调SCT的良性本质而非其未来影响，以及需要开展涉及媒体策略的关于SCD和SCT的公共卫生教育活动。大多数社区调查受访者（n = 243，86.2%）对SCD的遗传基础和严重程度有正确的常识，但只有16%（n = 45）知道自己的性状状态。与未从个人渠道获得信息的受访者相比，从朋友和熟人那里获得SCD信息的受访者了解自己SCT状态的可能性高出三倍（p < 0.01）。
尽管20世纪70年代的筛查历史充满争议，但鉴于遗传信息的迅速发展，镰状细胞病的管理和检测可以成为一个范例，帮助社区在对自身及其家人的未来做出明智决策时增强权能。
