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Hered Cancer Clin Pract. 2007 Jun 15;5(2):59-66. doi: 10.1186/1897-4287-5-2-59.

Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counselling.

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Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam.



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.

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