Li-Fraumeni syndrome (LFS), a rare cancer predisposition syndrome caused by germline mutations in the TP53 gene, is associated with significant lifetime risk of developing cancer and warrants extensive and long-term surveillance. There are psychosocial impacts on individuals and families living with this condition, from the initial diagnosis throughout multiple stages across the lifespan, but these impacts have not been systematically reviewed and organized. The objective of this scoping review was to synthesize and characterize the literature on psychosocial screening and outcomes, educational needs, support services, and available interventions for patients and families with LFS. A systematic search of six databases was most recently conducted in August 2020: (PubMed/MEDLINE (NLM), EMBASE (Elsevier), Cochrane Library (Wiley), CINAHL (EBSCO), PsycINFO (OVID), and Web of Science (Clarivate Analytics). A total of 15 757 titles were screened, and 24 articles included. Several important themes were identified across studies: factors associated with TP53 genetic testing, LFS surveillance, psychological outcomes, and communication. Findings related to these themes were organized into age-specific categories (age agnostic/across the lifespan, childhood, adolescence and young adulthood, and adulthood).

中文翻译：

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Li-Fraumeni 综合征患者和家庭的社会心理干预和需求：范围审查

Li-Fraumeni 综合征 (LFS)，一种由TP53种系突变引起的罕见癌症易感性综合征基因，与患癌症的显着终生风险相关，需要进行广泛和长期的监测。从最初的诊断到整个生命周期的多个阶段，对患有这种疾病的个人和家庭都有心理社会影响，但这些影响尚未得到系统的审查和组织。该范围审查的目的是综合和描述有关 LFS 患者和家庭的心理社会筛查和结果、教育需求、支持服务和可用干预措施的文献。最近于 2020 年 8 月对六个数据库进行了系统搜索：（PubMed/MEDLINE (NLM)、EMBASE (Elsevier)、Cochrane Library (Wiley)、CINAHL (EBSCO)、PsycINFO (OVID) 和 Web of Science (Clarivate Analytics ). 共筛选了 15 757 个标题，包括24篇文章。研究中确定了几个重要主题：与TP53基因检测、LFS 监测、心理结果和沟通。与这些主题相关的调查结果被组织成特定年龄的类别（年龄不可知论/整个生命周期、童年、青春期和青年期以及成年期）。