Claes Erna, Denayer Lieve, Evers-Kiebooms Gerry, Boogaerts Andrea, Legius Eric
Psychosocial Genetics Unit, Center for Human Genetics, University of Leuven, Leuven, Belgium.
Patient Educ Couns. 2004 Nov;55(2):265-74. doi: 10.1016/j.pec.2003.11.002.
This paper describes the motivation, recall of cancer risks, and illness representations of 40 individuals who had a predictive test for hereditary non-polyposis colorectal cancer (HNPCC) as well as the short-term impact of predictive testing by means of a semi-structured interview and self-report questionnaires. The main motives for predictive testing were early detection of cancer, knowledge of the children's risk and reduction of uncertainty. Overall, recall of cancer risks was good. Measurements of illness representations revealed low perceptions of "threat" of cancer and high confidence in the controllability of the disease. Distress was within normal ranges. Distress decreased significantly from pre- to post-test in non-carriers and did not in carriers. It also decreased in individuals for whom "reducing uncertainty" was a very important motive for the test, not in the others. Although part of the carriers did not have colonoscopies, all carriers intended to have regular colonoscopies in the future.
本文通过半结构化访谈和自我报告问卷，描述了40名接受遗传性非息肉病性结直肠癌（HNPCC）预测性检测的个体的检测动机、对癌症风险的认知以及疾病表征，以及预测性检测的短期影响。预测性检测的主要动机是癌症的早期发现、了解子女的患病风险以及减少不确定性。总体而言，对癌症风险的认知良好。疾病表征测量显示，对癌症“威胁”的认知较低，对疾病可控性的信心较高。痛苦程度在正常范围内。非携带者在检测前到检测后的痛苦程度显著降低，而携带者则没有。对于那些“减少不确定性”是检测的一个非常重要动机的个体，痛苦程度也有所降低，而其他个体则没有。尽管部分携带者没有进行结肠镜检查，但所有携带者都打算在未来定期进行结肠镜检查。
