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
- aDepartment of Medical Genetics, Haartman Institute, University of Helsinki, Helsinki, Finland, bDepartment of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland, cHuman Cancer Genetics Program, Comprehensive Cancer Center, Ohio State University, Ohio, USA, dDepartment of Epidemiology and Health Promotion, National Public Health Institute, Helsinki, Finland, eDepartment of Medical Genetics, Family Federation of Finland, PO Box 849, FIN-00101 Helsinki, Finland
- Dr Kääriäinen
- Revised 30 August 1999
- Accepted 15 September 1999
Abstract
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.
