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.
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.
Authors: M Nyström-Lahti; P Kristo; N C Nicolaides; S Y Chang; L A Aaltonen; A L Moisio; H J Järvinen; J P Mecklin; K W Kinzler; B Vogelstein Journal: Nat Med Date: 1995-11 Impact factor: 53.440
Authors: R Wooster; G Bignell; J Lancaster; S Swift; S Seal; J Mangion; N Collins; S Gregory; C Gumbs; G Micklem Journal: Nature Date: 1995 Dec 21-28 Impact factor: 49.962
Authors: A C DudokdeWit; A Tibben; H J Duivenvoorden; P G Frets; M W Zoeteweij; M Losekoot; A van Haeringen; M F Niermeijer; J Passchier Journal: J Med Genet Date: 1997-05 Impact factor: 6.318
Authors: C Lerman; C Hughes; B J Trock; R E Myers; D Main; A Bonney; M R Abbaszadegan; A E Harty; B A Franklin; J F Lynch; H T Lynch Journal: JAMA Date: 1999-05-05 Impact factor: 56.272
Authors: C M Benjamin; S Adam; S Wiggins; J L Theilmann; T T Copley; M Bloch; F Squitieri; W McKellin; S Cox; S A Brown Journal: Am J Hum Genet Date: 1994-10 Impact factor: 11.025
Authors: Janet Jull; Sascha Köpke; Maureen Smith; Meg Carley; Jeanette Finderup; Anne C Rahn; Laura Boland; Sandra Dunn; Andrew A Dwyer; Jürgen Kasper; Simone Maria Kienlin; France Légaré; Krystina B Lewis; Anne Lyddiatt; Claudia Rutherford; Junqiang Zhao; Tamara Rader; Ian D Graham; Dawn Stacey Journal: Cochrane Database Syst Rev Date: 2021-11-08
Authors: Kurt D Christensen; J Scott Roberts; Charmaine D M Royal; Grace-Ann Fasaye; Thomas Obisesan; L Adrienne Cupples; Peter J Whitehouse; Melissa Barber Butson; Erin Linnenbringer; Norman R Relkin; Lindsay Farrer; Robert Cook-Deegan; Robert C Green Journal: Genet Med Date: 2008-03 Impact factor: 8.822