Division of Psychosocial Research and Epidemiology and Family Cancer Clinic, The Netherlands Cancer Institute, Plesmanlaan 121, Amsterdam, The Netherlands.
Fam Cancer. 2013 Jun;12(2):325-39. doi: 10.1007/s10689-013-9653-8.
In the care of patients with Lynch Syndrome (LS), a range of psychosocial issues are encountered, which significantly affect patient outcomes. A brief historical background of 'psycho-onco-genetics' (the domain where psychology, oncology and genetics meet) in relation to LS is presented, followed by an overview of important psychosocial issues identified in the past 20 years. The identification of mismatch repair genes in 1993-1994 made possible genetic counseling and testing for patients who had cancer and for potentially high-risk relatives without cancer. At that time, concerns were raised about the potentially negative psychosocial impact of predictive genetic testing. Since 1993, a large number of studies have been conducted to investigate the possible psychosocial benefits and limitations of such testing. This article presents an overview of: the uptake of and motivations for genetic testing, its psychosocial impact (e.g. psychological adaptation, impact on risk perception and self-concept, and concerns about, and experiences of, genetic discrimination), psychological screening instruments, adherence to and decision-making about preventive strategies, family communication, lifestyle changes, reproductive technology utilization, and professional psychosocial support needs of members of families with LS. Finally, challenges for the future are discussed, including population screening and genomic testing.
在林奇综合征 (LS) 患者的护理中，会遇到一系列心理社会问题，这些问题会对患者的结局产生重大影响。本文简要介绍了“心理肿瘤遗传学”（心理学、肿瘤学和遗传学交汇的领域）的历史背景，然后概述了过去 20 年来确定的重要心理社会问题。1993-1994 年发现错配修复基因，使得对患有癌症的患者和没有癌症但可能具有高风险的亲属进行遗传咨询和检测成为可能。当时，人们对预测性遗传检测可能产生的潜在负面影响表示担忧。自 1993 年以来，已经进行了大量研究来调查此类检测的可能的心理社会益处和局限性。本文概述了：遗传检测的接受率和动机、其心理社会影响（例如心理适应、对风险感知和自我概念的影响、对遗传歧视的担忧和经历）、心理筛查工具、对预防策略的坚持和决策、家庭沟通、生活方式的改变、生殖技术的利用，以及 LS 患者家庭成员的专业心理社会支持需求。最后，讨论了未来的挑战，包括人群筛查和基因组检测。
