Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?
Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?
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DOI：
10.1007/s10689-016-9964-7
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发表时间：
2017-07-01
期刊：
影响因子：
2.2
通讯作者：
Mitchell, Gillian
中科院分区：
文献类型：
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作者：
McBride, Kate A.;Ballinger, Mandy L.;Mitchell, Gillian
生殖系TP 53突变携带者患一系列癌症的风险很高。有效的癌症风险管理对这些人来说是一个重要的问题。我们评估了WB-MRI筛查对TP 53突变携带者的心理社会影响，作为多器官癌症监测（SMOC+）方案的一部分，使用心理问卷和深入访谈来测量他们未满足的需求，焦虑和抑郁水平以及癌症担忧。我们提出了初步的心理社会调查结果，从17名参与者在他们的头12个月的试验。我们发现，从基线到WB-MRI后两周，参与者的平均焦虑显著降低（1.2，95% CI 0.17至2.23 p = 0.025），表明有一些益处。新出现的定性主题显示，大多数参与者在情感上得到了筛查计划的支持和遏制，并受到他们对生存的直接关注的激励，尽管他们被告知目前缺乏关于筛查TP 53突变患者在癌症发病率或死亡率方面的有效性的证据。对于那些确实从参与筛选研究中获得情感安慰的人来说，当研究结束时，被研究团队抛弃的感觉是一种风险。对于其他人来说，筛查被视为一种负担，与Li-Fraumeni综合征相关的癌症风险的无情性质相一致，尽管这些患者仍然声称他们希望参与，因为他们担心生存。TP 53突变的家庭需要持续的支持，因为它会影响整个家庭系统。这些研究结果表明，对TP 53突变患者进行全面的多器官筛查计划可提供独立于与综合征相关的癌症发病率和死亡率影响的心理益处。如果筛查试验还能降低与综合征相关的癌症发病率和死亡率，多器官筛查计划的益处将更大。这些发现也可能为患有其他多器官癌症易感综合征的个人和家庭提供信息。
Germline TP53 mutation carriers are at high risk of developing a range of cancers. Effective cancer risk management is an important issue for these individuals. We assessed the psychosocial impact in TP53 mutation carriers of WB-MRI screening as part of the Surveillance in Multi-Organ Cancer (SMOC+) protocol, measuring their unmet needs, anxiety and depression levels as well as cancer worry using psychological questionnaires and in-depth interviews about their experiences of screening. We present preliminary psychosocial findings from 17 participants during their first 12 months on the trial. We found a significant reduction in participants' mean anxiety from baseline to two weeks post WB-MRI (1.2, 95% CI 0.17 to 2.23 p = 0.025), indicative of some benefit. Emerging qualitative themes show most participants are emotionally supported and contained by the screening program and are motivated by their immediate concern about staying alive, despite being informed about the current lack of evidence around efficacy of screening for people with TP53 mutations in terms of cancer morbidity or mortality. For those that do gain emotional reassurance from participating in the screening study, feelings of abandonment by the research team are a risk when the study ends. For others, screening was seen as a burden, consistent with the relentless nature of cancer risk associated with Li-Fraumeni syndrome, though these patients still declared they wished to participate due to their concern with staying alive. Families with TP53 mutations need ongoing support due to the impact on the whole family system. These findings suggest a comprehensive multi-organ screening program for people with TP53 mutations provides psychological benefit independent of an impact on cancer morbidity and mortality associated with the syndrome. The benefits of a multi-organ screening program will be greater still if the screening tests additionally reduce the cancer morbidity and mortality associated with the syndrome. These findings may also inform the care of individuals and families with other multi-organ cancer predisposition syndromes.