Abstract
BackgroundThis 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.MethodsIn this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986–1998 completed a self-report questionnaire by mail.Results116 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%).ConclusionOn 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.
Highlights
Between 1 and 6% of all colorectal cancers represent a well-delineated genetic syndrome, hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome) [1, 2]
Since 1993, genetic testing for HNPCC has been possible for at-risk families [4,5,6,7]
The focus of the current paper is on the long-term psychosocial impact of genetic counselling for hereditary nonpolyposis colorectal cancer
Summary
Between 1 and 6% of all colorectal cancers represent a well-delineated genetic syndrome, hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome) [1, 2]. Carriers of HNPCC-related mutations have a lifetime risk of up to 80% of developing colorectal cancer [8]. The focus of the current paper is on the long-term psychosocial impact of genetic counselling for hereditary nonpolyposis colorectal cancer. 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. Conclusion: 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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