This Article Full Text Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by van Oostrom, I. Articles by Tibben, A. Search for Related Content PubMed PubMed Citation Articles by van Oostrom, I. Articles by Tibben, A.

Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

Iris van Oostrom, Hanne Meijers-Heijboer, Litanja N. Lodder, Hugo J. Duivenvoorden, Arthur R. van Gool, Caroline Seynaeve, Conny A. van der Meer, Jan G.M. Klijn, Bert N. van Geel, Curt W. Burger, Juriy W. Wladimiroff, Aad Tibben

From the Departments of Clinical Genetics, Medical Psychology and Psychotherapy, Medical Oncology, Surgical Oncology, Gynecology and Psychiatry, Erasmus MC, Rotterdam; Center of Human and Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands.

Address reprint requests to Iris van Oostrom, MA, Department of Medical Psychology and Psychotherapy, Erasmus MC Rotterdam, PO Box 1738, 3000 DR Rotterdam, the Netherlands; e-mail: i.vanoostrom{at}erasmusmc.nl.

Purpose: To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress.

Patients and Methods: Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning.

Results: Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception.

Conclusion: Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care.

This study was supported by the Department of Clinical Genetics, Erasmus MC, the Netherlands.

This article has been cited by other articles:

				N. Hoogerbrugge, Y. J. L. Kamm, P. Bult, K. M. Landsbergen, E. M. H. F. Bongers, H. G. Brunner, H. J. Bonenkamp, J. A. de Hullu, M. J. L. Ligtenberg, and C. Boetes The impact of a false-positive MRI on the choice for mastectomy in BRCA mutation carriers is limited Ann. Onc., April 1, 2008; 19(4): 655 - 659. [Abstract] [Full Text] [PDF]

				P. J. C. Bresser, A. R. Van Gool, C. Seynaeve, H. J. Duivenvoorden, M. F. Niermeijer, A. N. van Geel, M. Menke, J. G. M. Klijn, and A. Tibben Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy? Ann. Onc., October 1, 2007; 18(10): 1641 - 1645. [Abstract] [Full Text] [PDF]

				I. van Oostrom, H. Meijers-Heijboer, H. J. Duivenvoorden, A. H. J. T. Brocker-Vriends, C. J. van Asperen, R. H. Sijmons, C. Seynaeve, A. R. Van Gool, J. G. M. Klijn, and A. Tibben Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing Ann. Onc., July 1, 2006; 17(7): 1090 - 1095. [Abstract] [Full Text] [PDF]

				K. Anderson, J. S. Jacobson, D. F. Heitjan, J. G. Zivin, D. Hershman, A. I. Neugut, and V. R. Grann Cost-effectiveness of preventive strategies for women with a BRCA1 or a BRCA2 mutation. Ann Intern Med, March 21, 2006; 144(6): 397 - 406. [Abstract] [Full Text] [PDF]

				S. Becker, L. H. Cazares, P. Watson, H. Lynch, O. J. Semmes, R. R. Drake, and C. Laronga Surfaced-Enhanced Laser Desorption/Ionization Time-of-Flight (SELDI-TOF) Differentiation of Serum Protein Profiles of BRCA-1 and Sporadic Breast Cancer Ann. Surg. Oncol., October 1, 2004; 11(10): 907 - 914. [Abstract] [Full Text] [PDF]

				R Timman, T Stijnen, and A Tibben Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review J. Med. Genet., July 1, 2004; 41(7): e100 - e100. [Abstract] [Full Text] [PDF]