Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
Acta Oncol. 2009;48(7):999-1009. doi: 10.1080/02841860903104137.
PURPOSE: The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees' knowledge, risk perception, information sharing and satisfaction with the service. METHODS: In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees' knowledge and personal risk estimations were measured at four time points. In addition, counselees' satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. RESULTS: A significant increase in the level of knowledge in participants in the "breast cancer group" regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. CONCLUSION: Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.
目的:本随机干预研究的目的是调查接受扩展的癌症遗传信息对咨询者知识、风险感知、信息共享和对服务满意度的影响。
方法:共有 147 名受癌症和/或癌症家族史影响的咨询者被随机分配到扩展信息组或标准信息组。在四个时间点测量咨询者的知识水平和个人风险估计。此外,还评估了咨询者对咨询的满意度以及向高危亲属分享信息的情况。干预措施包括与专科护士会面、学习“坏消息告知”方法、提供书面材料和视频咨询。
结果:无论随机分组如何,“乳腺癌组”参与者的知识水平在时间上均显著增加。两组的个人风险正确估计在两周后均显著增加,但在八个月随访时下降。大多数参与者已将他们在癌症遗传诊所的就诊情况告知高危亲属。两组的大多数受访者对咨询非常满意。干预组唯一观察到的效果是,干预组的咨询者对提供的信息内容和告知亲属的方式更满意。
结论:显然,目前的遗传咨询管理得当,并非所有情况下都需要扩展信息。然而,一些咨询者需要额外的咨询。
Hered Cancer Clin Pract. 2017-1-11