title: Evaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancer.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
authors.affiliation: Department of Medical Genetics, Haartman Institute, University of Helsinki, Helsinki, Finland.
authors.forename: K
authors.initials: K
authors.lastname: Aktan-Collan
authors.forename: J P
authors.initials: JP
authors.lastname: Mecklin
authors.forename: A
authors.initials: A
authors.lastname: de la Chapelle
authors.forename: P
authors.initials: P
authors.lastname: Peltomäki
authors.forename: A
authors.initials: A
authors.lastname: Uutela
authors.forename: H
authors.initials: H
authors.lastname: Kääriäinen
mesh_terms: D000328:Adult; D000368:Aged; D015179:Colorectal Neoplasms / Q000235:genetics*; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics*; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling / Q000379:methods* / Q000523:psychology; D005820:Genetic Testing / Q000379:methods* / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation; D011446:Prospective Studies; D012307:Risk Factors