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Journal of Medical Genetics 2000;37:108-113; doi:10.1136/jmg.37.2.108
Copyright © 2000 by the BMJ Publishing Group Ltd.
J Med Genet 2000;37:108-113 ( February )

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

Katja Aktan-Collana e, Jukka-Pekka Mecklinb, Albert de la Chapellea c, Päivi Peltomäkia, Antti Uutelad, Helena Kääriäinene

a Department of Medical Genetics, Haartman Institute, University of Helsinki, Helsinki, Finland, b Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland, c Human Cancer Genetics Program, Comprehensive Cancer Center, Ohio State University, Ohio, USA, d Department of Epidemiology and Health Promotion, National Public Health Institute, Helsinki, Finland, e Department of Medical Genetics, Family Federation of Finland, PO Box 849, FIN-00101 Helsinki, Finland

Correspondence to: Dr Kääriäinen

Revised version received 30 August 1999; Accepted for publication 15 September 1999

OBJECTIVES---To evaluate the feasibility of a reduced counselling programme for predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC) in terms of counsellees' opinions on the extent and significance of genetic counselling and need for psychological support at different phases of the testing procedure.
DESIGN---Prospective follow up study with pre-test questionnaire assessment of background sociodemographic variables. The protocol comprised a pre-test counselling session, a period for reflection, and a test disclosure session. The outcome variables were studied by post-test questionnaires at one month 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 questionnaires.
RESULTS---The pre-test counselling was considered fairly or very useful by 89% of respondents and one post-test session was considered sufficient by over 80% of respondents at follow up. Fifty three percent would have used extra psychological support had it been offered with the counselling. On enquiry one year after receiving the test result, only 2% stated that the need for support was at its greatest at that time, while the majority (46%) reported that the need for support had been greatest at the moment of test disclosure.
CONCLUSIONS---A protocol that includes one comprehensive pre-test counselling session and a test disclosure session, supplemented with the option of professional psychological support, seems to be sufficient for both the educational and supportive needs of counsellees. Only a minority expressed a need for post-test follow up sessions, which suggests that, in this disorder, resources can be directed to the beneficial surveillance programmes rather than to extensive psychological support.


Keywords: predictive genetic testing; genetic counselling; HNPCC; hereditary non-polyposis colorectal cancer

© 2000 by J Med Genet
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