Acceptance of and Attitude TowardGenetic Testing for HereditaryNonpolyposis Colorectal Cancer:A Comparison of Participants andNonparticipants in Genetic Counseling |
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| Authors: | Monika Keller M.D. Ralf Jost Dipl. Psych. Martina Kadmon M.D. Hans-Peter Wüllenweber M.D. Carrie Mastromarino Haunstetter Sc.M. Frank Willeke M.D. Christine Jung M.D. Johannes Gebert Ph.D. Christian Sutter Ph.D. Christian Herfarth M.D. Markus W. Büchler M.D. |
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| Affiliation: | (1) Department of Surgery, University of Heidelberg, Heidelberg, Germany;(2) Psychosocial Care Unit, University of Heidelberg, Heidelberg, Germany;(3) Institute of Human Genetics, University of Heidelberg, Heidelberg, Germany;(4) Institute of Pathology, Division of Molecular Pathology, University of Heidelberg, Heidelberg, Germany |
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| Abstract: | PURPOSE: Data on the actual uptake of genetic testing forhereditary nonpolyposis colorectal cancer (HNPCC) in aclinical sample is still inconclusive. The present study aimedto define the actual uptake of genetic counseling and testingoffered to an unselected sample of 140 patients with colorectalcancer, fulfilling clinical criteria (Amsterdam orBethesda) suggestive of HNPCC, and to identify demographicand psychosocial factors associated with the decisionto participate in counseling. METHODS: Crosssectionalsurvey. Eligible subjects had been consecutivelyenrolled in a regional tumor registry between 1994 and1998, and were invited to attend an information session forHNPCC at the time genetic testing for HNPCC became available.Participants and nonparticipants in the informationsession completed a short questionnaire. RESULTS: The actualuptake rate of the information session in this samplewas 26 percent. Participants and nonparticipants were comparablewith regard to clinical criteria suggestive of HNPCC,awareness of the potential hereditary predisposition, andprevious history of cancer in the family. Some 60 percent ofparticipants experienced pronounced distress related totheir potential inheritance of the disorder, compared to 35percent among nonparticipants. Distress reached a clinicallysignificant level in 28 percent of participants. Restrictedcommunication within the family was observed frequently.Irrespective of groups, a positive attitude towardobtaining a gene test result predominated. CONCLUSIONS:Results suggest that expressed intention and attitude towardgenetic testing do not reliably predict actual uptake ofcounseling or testing. Thorough interdisciplinary counselingshould be provided to every patient with clinical criteriasuggestive of HNPCC. The considerable distress related tothe hereditary disorder should be adequately addressed, asshould be communication issues. |
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| Keywords: | Hereditarycolorectal cancer Genetic counseling Uptake of genetictesting Psychosocial distress Cancer worries Family communication |
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