Bleiker Eveline M A, Menko Fred H, Kluijt Irma, Taal Babs G, Gerritsma Miranda A, Wever Lidwina D V, Aaronson Neil K
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam.
Hered Cancer Clin Pract. 2007 Jun 15;5(2):59-66. doi: 10.1186/1897-4287-5-2-59.
This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling.
In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986-1998 completed a self-report questionnaire by mail.
116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%).
On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems.
本研究调查了：（1）遗传性非息肉病性结直肠癌（HNPCC）遗传咨询一年多后的癌症特异性痛苦水平；（2）社会人口统计学、临床和心理社会因素与痛苦水平之间的关联；（3）遗传咨询对家庭关系的影响，以及（4）遗传咨询的社会后果。
在这项横断面研究中，1986年至1998年期间接受过HNPCC遗传咨询的个体通过邮件完成了一份自我报告问卷。
116名个体（回复率81%）完成了问卷，平均是在最后一次咨询 session 后4年。在所有受访者中，6%有临床上显著水平的癌症特异性痛苦（事件影响量表，IES）。在过去10年里与专业心理社会工作者接触过以了解癌症风险与当前较高水平的癌症特异性痛苦显著相关。只有少数受咨询者报告遗传咨询对以下方面有任何不利影响：与子女交流遗传咨询情况（9%）、家庭关系（5%）、获得人寿保险（8%）、选择或更换工作（2%）以及获得抵押贷款（2%）。
平均而言，在HNPCC遗传咨询四年后，只有一小部分接受咨询的个体报告有临床上显著水平的痛苦，或重大的家庭或社会问题。
