The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.
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DOI：
10.1038/gim.2017.8
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发表时间：
2017-09
期刊：
影响因子：
--
通讯作者：
Strong L
中科院分区：
文献类型：
--
作者：
Ross J;Bojadzieva J;Peterson S;Noblin SJ;Yzquierdo R;Askins M;Strong L
在过去的五年里，新的筛查方案已经开发出来，为Li-Fraumeni综合征患者提供了更好的癌症筛查选择。关于这些筛查方案的社会心理影响的报道很少。本研究的目的是确定参与筛查如何影响个体的心理社会，检查筛查的利弊，并评估继续筛查的可能障碍。我们进行了一项定性研究，包括2015年12月至2016年2月期间在md安德森癌症中心参加LFS筛查项目的20名患者进行的半结构化电话访谈。数据分析表明，筛查的好处包括早期发现、安心、集中筛查、知识提供力量以及筛查使LFS看起来更宜居。感知到的缺点包括后勤问题、难以驾驭系统、筛选令人筋疲力尽，以及显著的负面情绪反应，如焦虑、恐惧和怀疑。不管现在的情绪如何，100%的参与者都计划继续在这个项目中进行筛选。我们的数据表明，筛查的好处大于筛查的缺点。参加这个筛查项目的个体，由于接受了筛查项目，他们的心理健康状况似乎有所改善。
In the past five years new screening protocols have been developed that provide improved cancer screening options for individuals with Li-Fraumeni Syndrome. 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. We performed a qualitative study consisting of semi-structured phone interviews conducted from December 2015-February 2016 with 20 individuals attending the LFS screening program at M.D. Anderson Cancer Center. 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 plan on continuing screening in the program. Our data indicates that the perceived benefits of screening outweigh the drawbacks of screening. Individuals in this screening program appear to have improved psychosocial well-being because of their access to the screening program.
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影响因子：
5
作者：
Anupindi, Sudha A.;Bedoya, Maria A.;Chauvin, Nancy A.
通讯作者：
Chauvin, Nancy A.
影响因子：
39.2
作者：
LI, FP;FRAUMENI, JF
通讯作者：
FRAUMENI, JF
影响因子：
51.1
作者：
Villani, Anita;Tabori, Uri;Malkin, David
通讯作者：
Malkin, David
DOI：
10.12788/jcso.0169
发表时间：
2015-09-01
期刊：
JOURNAL OF COMMUNITY AND SUPPORTIVE ONCOLOGY
影响因子：
--
作者：
Ruddy, Kathryn J.;Greaney, Mary L.;Partridge, Ann H.
通讯作者：
Partridge, Ann H.
影响因子：
56.9
作者：
MALKIN, D;LI, FP;FRIEND, SH
通讯作者：
FRIEND, SH