Evaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancer

Objectives-To evaluate the feasibility of a reduced counselling programme f or predictive genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) in terms of counsellees' opinions on the extent and significance o f genetic counselling and need for psychological support at different phase s of the testing procedure. Design-Prospective follow up study with pre-test questionnaire assessment o f background sociodemographic variables. The protocol comprised a pre-test counselling session, a period for reflection, and a rest disclosure session . The outcome variables were studied by post-test questionnaires at one mon th and one year follow up. Subjects-Two hundred and seventy one high risk members of 36 families with HNPCC who attended both counselling sessions and completed the questionnair es, Results-The pre-test counselling was considered fairly or very useful by 89 % of respondents and one post-test session was considered sufficient by ove r 80% of respondents at follow up. Fifty three percent would have used extr a psychological support had it been offered with the counselling. On enquir y one year after receiving the test result, only 2% stated that the need fo r support was at its greatest at that time, while the majority (46%) report ed that the need fur support had been greatest at the moment of test disclo sure. Conclusions-A protocol that includes one comprehensive pre-test counselling session and a test disclosure session, supplemented with the option of pro fessional psychological support, seems to be sufficient for both the educat ional and supportive needs of counsellees. Only a minority expressed a need far post-test follow up sessions, which suggests that, in this disorder, r esources can be directed to the beneficial surveillance programmes rather t han to extensive psychological support.