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Journal of Genetic Counseling

, Volume 14, Issue 5, pp 349–363 | Cite as

Predictive Genetic Testing for Hereditary Breast and Ovarian Cancer: Psychological Distress and Illness Representations 1 Year Following Disclosure

  • E Claes
  • G. Evers-Kiebooms
  • L. Denayer
  • M. Decruyenaere
  • A. Boogaerts
  • K. Philippe
  • E. Legius
Original Research

Abstract

This prospective study evaluates emotional functioning and illness representations in 68 unaffected women (34 carriers/34 noncarriers) 1 year after predictive testing for BRCA1/2 mutations when offered within a multidisciplinary approach. Carriers had higher subjective risk perception of breast cancer than noncarriers. Carriers who did not have prophylactic oophorectomy had the highest risk perception of ovarian cancer. No differences were found between carriers and noncarriers regarding perceived seriousness and perceived control of breast and ovarian cancer. Mean levels of distress were within normal ranges. Only few women showed an overall pattern of clinically elevated distress. Cancer-specific distress and state-anxiety significantly decreased in noncarriers from pre- to posttest while general distress remained about the same. There were no significant changes in distress in the group of carriers except for ovarian cancer distress which significantly decreased from pre- to posttest. Our study did not reveal adverse effects of predictive testing when offered in the context of a multidisciplinary approach.

Key Words

predictive testing BRCA1/2 impact psychological distress illness representations counseling 

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References

  1. Antoniou, A., Pharoah, P. D. P., Narod, S., Risch, H. A., Eyfjord, J. E., Hopper, J. L., Loman, N., Olsson, H., Johannsson, O., Borg, A., Pasini, B., Radice, P., Manoukian, S., Heeles, D. M., Tang, M., Olah, E., Anton-Culver, H., Warner, E., Lubinski, J., Gronwald, J., Gorski, B., Tulinius, H., Thorlacius, S., Eerola, H., Nevanlinna, H., Syrjakoski, K., Kallioniemi, O.-P., Thomposn, D., Evans, C., Peto J., Lalloo, F., Evans, D. G., & Easton, D. F. (2003). Average risks of breast and ovarian cancer associated with BRCA1or BRCA2 mutations detected in case series unselected for family history: A combined analysis of 22 studies. Am J Hum Genet, 72, 1117–1130.CrossRefPubMedGoogle Scholar
  2. Arrindell, W. A., & Ettema, J. H. M. (1986). SCL-90. Handleiding bij een multidimensionele psychopathologie-indicator. Lisse: Swets & Zeitlinger.Google Scholar
  3. Audrain, J., Schwartz, M. D., Lerman, C., Hughes, C., & Peshkin, B. N. (1997). Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal. Ann Behav Med, 19, 370–377.Google Scholar
  4. Bleiker, E. M. A., Hahn, D. E. E., & Aaronson, N. K. (2003). Psychosocial issues in cancer genetics. Current status and future directions. Acta Oncologica, 42, 276–286.CrossRefPubMedGoogle Scholar
  5. Broadstock, M., Michie, S., Gray, J., Mackay, J., & Marteau, T. M. (2000). The psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer—A pilot study. Psychooncology, 9, 537–548.CrossRefPubMedGoogle Scholar
  6. Champion, V. L. (1984). Instrument development for health belief model constructs. Adv Nurs Sci, 6, 73–85.Google Scholar
  7. Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: Motivation, illness representations and short-term psychological impact. Patient Educ Couns, 55, 265–274.CrossRefPubMedGoogle Scholar
  8. Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet, 116A, 11–19.CrossRefGoogle Scholar
  9. Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2004). Diagnostic genetic testing for hereditary breast and ovarian cancer in cancer patients: Women's looking back on the pretest period and a psychological evaluation. Genetic Test, 8, 13–21.CrossRefGoogle Scholar
  10. Claes, E., Evers-Kiebooms, G., Decruyenaere, M., Denayer, L., Boogaerts, A., Philippe, K., & Legius, E. (in press). Surveillance behavior and prophylaetic surgery after predictive testing for hereditary breast/ovarian cancer. Behav Med.Google Scholar
  11. Codori, A. M., Petersen, G. M., Miglioretti, D. L., Larkin, E. K., Bushey, M. T., Young, C., Brensinger, J. D., Johnson, K., Bacon, J. A., & Booker, S. V. (1999). Attitudes toward colon cancer gene testing: Factors predicting uptake. Cancer Epidemiol Biomark Prev, 8, 345–351.Google Scholar
  12. Coyne, J. C., Kruus, L., Racioppo, M., Calzone, K., & Armstrong, K. (2003). What do ratings of cancer-specific distress mean among women at high risk of breast and ovarian cancer. Am J Med Genet, 116A, 222–228.CrossRefGoogle Scholar
  13. Croyle, R. T., & Lerman, C. (1999). Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr, 25, 59–66.PubMedGoogle Scholar
  14. Croyle, R. T., Smith, K. R., Botkin, J. R., Baty, B., & Nash, J. (1997). Psychological responses to BRCA1 mutation testing: Preliminary findings. Health Psychol, 16, 63–72.CrossRefPubMedGoogle Scholar
  15. De Vos, M., Poppe, B., Delvaux, I., Mortier, G., Claes, K., Messiaen, L., & De Paepe, A. (1999). Genetic counseling and testing for hereditary breast and ovarian cancer: The Gent(le) Approach. Dis Markers, 15, 191–195.PubMedGoogle Scholar
  16. Decruyenaere, M., Evers-Kiebooms, G., Denayer, L., Welkenhuysen, M., Claes, E., Legius, E., & Demyttenaere, K. (2000). Predictive testing for hereditary breast and ovarian cancer: A psychological framework for pre-test counselling. Eur J Hum Genet, 8, 130–136.CrossRefPubMedGoogle Scholar
  17. Decruyenaere, M., Evers-Kiebooms, G., Welkenhuysen, M., Denayer, L., & Claes, E. (2000). Cognitive representations of breast cancer, emotional distress and preventive health behaviour: A theoretical perspective. Psychooncology, 9, 528–536.CrossRefPubMedGoogle Scholar
  18. Dekker, J., & Oomen, J. (1999). Depression and coping. Eur J Psychiatry, 13, 183–189.Google Scholar
  19. Dorval, M., Patenaude, A. F., Schneider, K. A., Kieffer, S. A., DiGianni, L., Kalkbrenner, K. L., Bromberg, J. I., Basili, L.~A., Calzone, K., Stopfer, J., Weber, B. L., & Garber, J. E. (2000). Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: Findings from p53 and BRCA1 testing programs. J Clin Oncol, 18, 2135–2142.PubMedGoogle Scholar
  20. DudokdeWit, A. C., Tibben, A., Duivenvoorden, H. J., Niermeijer, M. F., Passchier, J., Trijsburg, R. W., & the Rotterdam/Leiden Genetics Workgroup (1998). Distress individuals facing predictive DNA testing for Autosomal Dominant Late-Onset Disorders: Comparing Questionnaire results with in-depth interviews. Am J Med Genet, 75, 62–74.Google Scholar
  21. Evers-Kiebooms, G. (1990). Predictive testing for Huntington's disease in Belgium. J Psychosom Obstet Gynaecol, 11, 61–72.Google Scholar
  22. Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: Implications for multidisciplinary counselling and for genetic education. Soc Sci Med, 51, 831–841.CrossRefPubMedGoogle Scholar
  23. Folkman, S., & Lazarus, R. S. (1988). Coping as a mediator of emotion. J Pers Soc Psychol, 54, 466–475.CrossRefPubMedGoogle Scholar
  24. Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychol Health, 18, 141–184.CrossRefGoogle Scholar
  25. Horowitz, M. J., Wilner, N., & Alvarez, W. (1979). Impact of Event Scale: A measure of subjective stress. Psychosom Med, 41, 209–218.PubMedGoogle Scholar
  26. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.Google Scholar
  27. Lerman, C., & Croyle, R. T. (1996). Emotional and behavioral responses to genetic testing for susceptibility to cancer. Oncology, 10, 191–195.PubMedGoogle Scholar
  28. Lerman, C., Croyle, R. T., Tercyak, K. P., & Hamann, H. (2002). Genetic testing: Psychological aspects and limitations J Consult Clin Psychol, 70, 784–797.CrossRefPubMedGoogle Scholar
  29. Lerman, C., Hughes, C., Lemon, S. J., Main, D., Snyder, C., Durham, C., Narod, S., & Lynch, H. T. (1998). What you don't know can hurt you: Adverse psychological effects in members of BRCA1-linked and BRCA2-linked families who decline testing. J Clin Oncol, 16, 1650–1654.PubMedGoogle Scholar
  30. Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., Gold, K., Trock, B., Main, D., Lynch, J., Fulmore, C., Snyder, C., Lemon, S. J., Conway, T., Tonin, P., Lenoir, G., & Lynch, H. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA, 275, 1885–1892.CrossRefPubMedGoogle Scholar
  31. Lerman, C., Schwartz, M. D., Lin, T. H., Hughes, C., & Narod, S. (1997). The influence of psychological distress on use of genetic testing for cancer risk. J Consult Clin Psychol, 65, 414–420.CrossRefPubMedGoogle Scholar
  32. Lim, J., Macluran, M., Price, M., Bennett, B., Butow, P., and the kConFab Psychosocial group (2004). Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. J Genet Counsel, 13, 115–133.CrossRefGoogle Scholar
  33. Loader, S., Shields, C. G., & Rowley, P. T. (2004). Impact of genetic testing for breast-ovarian cancer susceptibility. Genet Test, 8, 1–12.CrossRefPubMedGoogle Scholar
  34. Lodder, L. N. (2001). Dealing with the risk for hereditary breast and ovarian cancer. A prospective study on psychological consequences of choices on genetic testing, surveillance and prophylactic surgery. Erasmus University Rotterdam, Doctoral dissertation.Google Scholar
  35. Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G., Seynaeve, C., van Geel, A. N., Tilanus, M. M., Bartels, C. C., Verhoog, L. C., Brekelmans, C. T., Burger, C. W., & Niermeijer, M. F. (2002). One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: Emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Res Ther, 73, 97–112.CrossRefGoogle Scholar
  36. Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G., Duivenvoorden, H. J., Tibben, A., Wagner, A., van der Meer, C. A., van den Ouweland, A. M., & Niermeijer, M. F. (2000). The psychological impact of receiving BRCA1/BRCA2 test results. Am J Med Genet, 98, 15–24.CrossRefGoogle Scholar
  37. Meiser, B., & Halliday, J. L. (2002). What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci Med, 54, 1463–1470.CrossRefPubMedGoogle Scholar
  38. Meiser, B., Butow, P., Friedlander, M., Barratt, A., Schnieden, V., Watson, M., Brown, J., & Tucker, K. (2002). Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer, 38, 2025–2031.PubMedGoogle Scholar
  39. Pasacreta, J. V. (2003). Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: An integrative review. Cancer Invest, 21, 588–623.CrossRefPubMedGoogle Scholar
  40. Scharloo, M., Kaptein, A. A., Weinman, J., Hazes, J. M., Willems, L. N. A., Bergman, W., & Rooijmans, H. G. M. (1998). Illness perceptions, coping and functiong in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis. J Psychosom Res, 44, 573–585.CrossRefPubMedGoogle Scholar
  41. Schreurs, P. J., van de Willige, G., Tellegen, B., & Brosschot, J. F. (1988). De Utrechtse Copinglijst. Omgaan met problemen en gebeurtenissen. Lisse: Swets & Zeitlinger.Google Scholar
  42. Schwartz, M. D., Peshkin, B. N., Hughes, C., Main, D., Isaacs, C., & Lerman, C. (2002). Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol, 20, 514–520.CrossRefPubMedGoogle Scholar
  43. Shapiro, D. H., Schwartz, C. E., & Astin, J. A. (1996). Controlling ourselves, controlling our world. Psychology's role in understanding positive and negative consequences of seeking and gaining control. Am Psychol, 51, 1213–1230.CrossRefPubMedGoogle Scholar
  44. Smith, K. R., West, J. A., Croyle, R. T., & Botkin, J. R. (1999). Familial context of genetic testing for cancer susceptibility: Moderating effects of siblings' test result on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev, 8, 385–392.PubMedGoogle Scholar
  45. Tercyak, K. P., Lerman, C., Peshkin, B., Hughes, C., Main, D., Isaacs, C., & Schwartz, M. D. (2001). Effects of copingstyle and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk. Health Psychol, 20, 217– 222.CrossRefPubMedGoogle Scholar
  46. Thewes, B., Meiser, B., Tucker, K., & Schnieden, V. (2003). Screening for psychological distress and vulnerability factors in women at increased risk for breast cancer: A review of the literature. Psychol Health Med, 8, 289–304.CrossRefGoogle Scholar
  47. Van der Ploeg, H. M., Defares, P. B., & Spielberger, C. D. (1980). Handleiding bij de Zeflbeoordelingsvragenlijst: een Nederlandstalige bewerking van de Spielberger State-Trait Anxiety Inventory. Lisse: Swets & Zeitlinger.Google Scholar
  48. Van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., van der Meer, C. A., Klijn, J. G., van Geel, B. N., Burger, C. W., Wladimiroff, J. W., & Tibben, A. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: A 5-year follow-up study. J Clin Oncol, 21, 3867–3874.CrossRefPubMedGoogle Scholar
  49. Wylie, J. E., Smith, K. R., & Botkin, J. R. (2003). Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet, 119C, 35–44.CrossRefGoogle Scholar

Copyright information

© Springer Science + Business Media, Inc. 2005

Authors and Affiliations

  • E Claes
    • 1
  • G. Evers-Kiebooms
    • 1
    • 3
  • L. Denayer
    • 1
  • M. Decruyenaere
    • 1
  • A. Boogaerts
    • 1
  • K. Philippe
    • 1
  • E. Legius
    • 2
  1. 1.Psychosocial Genetics Unit, Center for Human GeneticsUniversity of LeuvenBelgium
  2. 2.Clinical Genetics Unit, Center for Human GeneticsUniversity of LeuvenBelgium
  3. 3.Psychosocial Genetics UnitCenter for Human GeneticsLeuvenBelgium

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