title: Genetic counselling protocols for hereditary non-polyposis colorectal cancer: a survey of UK regional genetics centres.
abstract: Predictive testing for hereditary non-polyposis colorectal cancer (HNPCC) is typically offered within an extended genetic counselling protocol, originally developed in the context of Huntington's Disease. We conducted a questionnaire survey of 20 UK regional genetics centres to obtain evidence regarding current approaches to HNPCC pre-test counselling. Centres were asked to describe the structure and content of pre-test counselling and their views on shortening the protocol. Sixteen centres responded to the survey. Four centres were considering shortening the protocol or had already done so. The remaining centres followed an extended protocol of two sessions separated by a 1-month period for reflection, although two centres conceded that the protocol had been reduced in certain cases. Different centres used different terminology to describe the content of pre-test counselling. Although content areas relating to education or impact of test results were covered more frequently than those relating to reflection, there was a marked tendency to consider all three areas as essential and to use both educational and reflective counselling, even in those centres that favoured a shortened protocol. This apparent dilemma highlights both the practical difficulty of how to shorten HNPCC pre-test counselling protocols and the need for controlled trials of different approaches.
authors.affiliation: Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff CF4 4XN, Wales, UK. brainke@cardiff.ac.uk
authors.forename: K
authors.initials: K
authors.lastname: Brain
authors.forename: J
authors.initials: J
authors.lastname: Soldan
authors.forename: J
authors.initials: J
authors.lastname: Sampson
authors.forename: J
authors.initials: J
authors.lastname: Gray
mesh_terms: D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000235:genetics; D005817:Genetic Counseling; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D010342:Patient Acceptance of Health Care; D010353:Patient Education as Topic / Q000379:methods*; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D006113:United Kingdom