Li-Fraumeni 综合征个体接受 Li-Fraumeni 教育和早期检测（LEAD）项目的心理社会影响。
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.
机构信息
Clinical Cancer Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
Department of Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
出版信息
Genet Med. 2017 Sep;19(9):1064-1070. doi: 10.1038/gim.2017.8. Epub 2017 Mar 16.
PURPOSE
In the past 5 years, new screening protocols have been developed that provide improved cancer screening options for individuals with Li-Fraumeni syndrome (LFS). Very little has been published on the psychosocial impact of these screening protocols. The goals of this study were to determine how participation in screening impacts individuals psychosocially, to examine the benefits and drawbacks of screening, and to evaluate possible barriers to continued screening.
METHODS
We performed a qualitative study consisting of semistructured phone interviews conducted from December 2015 to February 2016 with 20 individuals attending the LFS screening program at MD Anderson Cancer Center.
RESULTS
Data analysis showed that benefits of screening include early detection, peace of mind, centralized screening, knowledge providing power, and screening making LFS seem more livable. Perceived drawbacks included logistical issues, difficulty navigating the system, screening being draining, and significant negative emotional reactions such as anxiety, fear, and skepticism. Regardless of the emotions that were present, 100% of participants planned on continuing screening in the program.
CONCLUSION
Our data indicate that the perceived benefits of screening outweigh the drawbacks of screening. Individuals in this screening program appeared to have improved psychosocial well-being because of their access to the screening program.Genet Med advance online publication 16 March 2017.
目的
在过去的 5 年中，已经开发出了新的筛查方案，为李-佛美尼综合征（LFS）患者提供了更好的癌症筛查选择。关于这些筛查方案的心理社会影响，发表的内容很少。本研究的目的是确定参与筛查如何在心理社会方面影响个体，检查筛查的益处和弊端，并评估继续筛查的可能障碍。
方法
我们进行了一项定性研究，包括 2015 年 12 月至 2016 年 2 月期间对在 MD 安德森癌症中心 LFS 筛查计划中参加的 20 个人进行的半结构式电话访谈。
结果
数据分析表明，筛查的益处包括早期发现、安心、集中筛查、提供知识的力量，以及使 LFS 更具可操作性的筛查。被认为的缺点包括后勤问题、系统导航困难、筛查令人疲惫不堪，以及出现焦虑、恐惧和怀疑等明显的负面情绪反应。无论存在何种情绪，100%的参与者都计划继续参加该计划的筛查。
结论
我们的数据表明，筛查的益处超过了筛查的弊端。参加这个筛查计划的个体似乎因为能够参加筛查计划而改善了心理健康。
Genet Med 在线发表 2017 年 3 月 16 日
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