Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following 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.Between 1 and 6% of all colorectal cancers represent a well-delineated genetic syndrome, hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome) [1,2]. Before 1993, cancer risk estimates and colon screening recommendations were based on family history only [3]. Since 1993, genetic testing for HNPCC has been possible for at-risk families [4-7]. Carriers of HNPCC-related mutations have a lifetime risk of up to 80% of developing colorectal cancer [8]. Those meeting the clinical criteria for HNPCC [9] and the proven carriers of HNPCC-related mismatch repair (MMR) genes are advised to undergo a colonoscopy every 1–2 years [10]. In a recent paper, we reported on compliance with recommended colon-screening advice [11]. The focus of the current paper is on the long-term psychosocial impact of genetic counselling for hereditary nonpolyposis colorectal cancer.Most studies on the psychosocial consequences of genetic counselling and testing f