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

Overview

Journal J Genet Couns

Publisher Wiley

Specialty Genetics

Date 2005 Oct 1

PMID 16195942

Citations 33

Authors

E Claes

G Evers-Kiebooms

L Denayer

M Decruyenaere

A Boogaerts

K Philippe

E Legius

Affiliations

Soon will be listed here.

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.

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References

Wylie J, Smith K, Botkin J . Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet C Semin Med Genet. 2003; 119C(1):35-44. DOI: 10.1002/ajmg.c.10002. View

Schwartz M, Peshkin B, Hughes C, Main D, Isaacs C, Lerman C . Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol. 2002; 20(2):514-20. DOI: 10.1200/JCO.2002.20.2.514. View

Claes E, Evers-Kiebooms G, Decruyenaere M, Denayer L, Boogaerts A, Philippe K . Surveillance behavior and prophylactic surgery after predictive testing for hereditary breast/ovarian cancer. Behav Med. 2005; 31(3):93-105. DOI: 10.3200/BMED.31.3.93-106. View

Pasacreta J . Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Invest. 2003; 21(4):588-623. DOI: 10.1081/cnv-120022380. View

DudokdeWit A, Tibben A, Duivenvoorden H, Niermeijer M, Passchier J, Trijsburg R . Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: comparing questionnaire results with in-depth interviews. Rotterdam/Leiden Genetics Workgroup. Am J Med Genet. 1998; 75(1):62-74. DOI: 10.1002/(sici)1096-8628(19980106)75:1<62::aid-ajmg14>3.0.co;2-q. View

van Oostrom I, Meijers-Heijboer H, Lodder L, Duivenvoorden H, Van Gool A, Seynaeve C . Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol. 2003; 21(20):3867-74. DOI: 10.1200/JCO.2003.10.100. View

Audrain J, Schwartz M, Lerman C, Hughes C, Peshkin B, Biesecker B . Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: the contributions of personality and appraisal. Ann Behav Med. 1998; 19(4):370-7. DOI: 10.1007/BF02895156. View

Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E . Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns. 2004; 55(2):265-74. DOI: 10.1016/j.pec.2003.11.002. View

Loader S, Shields C, Rowley P . Impact of genetic testing for breast-ovarian cancer susceptibility. Genet Test. 2004; 8(1):1-12. DOI: 10.1089/109065704323015987. View

10.

Decruyenaere M, Evers-Kiebooms G, Denayer L, Welkenhuysen M, Claes E, Legius E . Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling. Eur J Hum Genet. 2000; 8(2):130-6. DOI: 10.1038/sj.ejhg.5200438. View

11.

Tercyak K, Lerman C, Peshkin B, Hughes C, Main D, Isaacs C . Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk. Health Psychol. 2001; 20(3):217-22. View

12.

Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M . Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer. 2002; 38(15):2025-31. DOI: 10.1016/s0959-8049(02)00264-2. View

13.

Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E . 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 A. 2002; 116A(1):11-9. DOI: 10.1002/ajmg.a.10868. View

14.

Bleiker E, Hahn D, Aaronson N . Psychosocial issues in cancer genetics--current status and future directions. Acta Oncol. 2003; 42(4):276-86. DOI: 10.1080/02841860310004391. View

15.

Lerman C, Schwartz M, Lin T, Hughes C, Narod S, Lynch H . The influence of psychological distress on use of genetic testing for cancer risk. J Consult Clin Psychol. 1997; 65(3):414-20. DOI: 10.1037//0022-006x.65.3.414. View

16.

Lerman C, Croyle R, Tercyak K, Hamann H . Genetic testing: psychological aspects and implications. J Consult Clin Psychol. 2002; 70(3):784-97. DOI: 10.1037//0022-006x.70.3.784. View

17.

Horowitz M, WILNER N, Alvarez W . Impact of Event Scale: a measure of subjective stress. Psychosom Med. 1979; 41(3):209-18. DOI: 10.1097/00006842-197905000-00004. View

18.

Lerman C, Hughes C, Lemon S, Main D, Snyder C, Durham C . What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. J Clin Oncol. 1998; 16(5):1650-4. DOI: 10.1200/JCO.1998.16.5.1650. View

19.

Decruyenaere M, Evers-Kiebooms G, Welkenhuysen M, Denayer L, Claes E . Cognitive representations of breast cancer, emotional distress and preventive health behaviour: a theoretical perspective. Psychooncology. 2001; 9(6):528-36. DOI: 10.1002/1099-1611(200011/12)9:6<528::aid-pon486>3.0.co;2-#. View

20.

Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G . BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA. 1996; 275(24):1885-92. View