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Predictive genetic testing for hereditary non-polyposis colorectal cancer: Uptake and long-term satisfaction

  1. Katja Aktan-Collan1,7,
  2. Jukka-Pekka Mecklin2,
  3. Heikki Järvinen3,
  4. Minna Nyström-Lahti1,
  5. Päivi Peltomäki1,
  6. Ismo Söderling4,
  7. Antti Uutela5,
  8. Albert de la Chapelle1,6,
  9. Helena Kääriäinen7,*

Article first published online: 13 APR 2000

DOI: 10.1002/(SICI)1097-0215(20000120)89:1<44::AID-IJC8>3.0.CO;2-3

Issue

International Journal of Cancer

International Journal of Cancer

Volume 89, Issue 1, pages 44–50, 20 January 2000

Additional Information

How to Cite

Aktan-Collan, K., Mecklin, J.-P., Järvinen, H., Nyström-Lahti, M., Peltomäki, P., Söderling, I., Uutela, A., de la Chapelle, A. and Kääriäinen, H. (2000), Predictive genetic testing for hereditary non-polyposis colorectal cancer: Uptake and long-term satisfaction. International Journal of Cancer, 89: 44–50. doi: 10.1002/(SICI)1097-0215(20000120)89:1<44::AID-IJC8>3.0.CO;2-3

Author Information

  1. 1

    Department of Medical Genetics, Haartman Institute, University of Helsinki, Helsinki, Finland

  2. 2

    Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland

  3. 3

    Second Department of Surgery, Helsinki University Central Hospital, Helsinki, Finland

  4. 4

    Population Research Institute, Family Federation of Finland, Helsinki, Finland

  5. 5

    Department of Epidemiology and Health Promotion, National Public Health Institute, Helsinki, Finland

  6. 6

    Human Cancer Genetics Program, Comprehensive Cancer Center, Ohio State University, Columbus, OH, USA

  7. 7

    Department of Medical Genetics, Family Federation of Finland, Helsinki, Finland

*Family Federation of Finland, PO Box 849, FIN-00101 Helsinki, Finland. Fax: +358-9-645 018

Publication History

  1. Issue published online: 13 APR 2000
  2. Article first published online: 13 APR 2000
  3. Manuscript Revised: 13 SEP 1999
  4. Manuscript Received: 3 JUN 1999

Funded by

  • European Commission. Grant Number: BMH4-CT96-0772
  • US National Institutes of Health. Grant Numbers: CA 67941, CA 16058
  • Academy of Finland
  • Finnish Cancer Society
  • Finnish Medical Society Duodecim
  • Finnish-Norwegian Medical Foundation
  • Folkhälsan
  • Institute of Genetics

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Abstract

The aim of this prospective study was to assess the uptake of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC) and its associations with sociodemographic and other factors, and long-term satisfaction with taking the test. The test was offered to all high-risk members (n = 446) of 36 Finnish HNPCC families in which the mutation was known. The procedure comprised an educational counselling session, a period for reflection, and a test disclosure session. Data were collected by questionnaires sent before the educational counselling and 1 month and 1 year after the test disclosure. Of those eligible, 85% (n = 381) completed the first questionnaire study. Non-participation was more common among men living alone who had not participated in the clinical cancer surveillance programme. Of the 347 subjects who attended counselling, 334 (75% of all subjects) were actually tested. After logistic-regression analysis, the only significant factor predicting test acceptance proved to be employment status: those employed were more likely than others to accept the test (odds ratio = 2.25; 95% confidence intervals, 1.09 to 4.61). At follow-up, over 90% of the subjects were fully satisfied with the decision to take the test. In conclusion, acceptance of the test was considerably higher than in previously reported studies. We attribute this to our careful face-to-face individualized counselling, our health care system, and to attitudes of the Finnish population, which are generally favourable towards health care and disease prevention. Int. J. Cancer (Pred. Oncol.) 89:44–50, 2000. © 2000 Wiley-Liss, Inc.

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