The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress

Abstract

Women referred to a familial breast cancer clinic completed questionnaires before and after counselling and at annual follow-up to assess their risk estimate and psychological characteristics. The aims were to determine whether those who attended the clinic overestimated their risk or were highly anxious and whether counselling influenced risk estimates and levels of distress. Women (n = 450) at this clinic were more likely to underestimate (39%) than overestimate (14%) their risk. Mean trait anxiety scores were higher than general population data (t = 4.9, n = 1059, P<0.001) but not significantly different from published data from other screening samples. Overestimators (z = 5.69, P<0.0001) and underestimators (z = -8.01, P<0.0001) reported significantly different risk estimates (i.e. increased accuracy) after counselling, but significant inaccuracies persisted. Over- (n = 12) and underestimators (n = 60) were still inaccurate in their risk estimates by a factor of 2 after counselling. Thirty per cent of the sample scored above the cut-off (5/6) for case identification on a screening measure for psychological distress, the General Health Questionnaire (GHQ). GHQ scores were significantly lower after counselling (t = 3.6, d.f. = 384, P = 0.0004) with no evidence of increasing risk estimate causing increased distress. The risk of distress after counselling was greater for younger women and those who were more distressed at first presentation. The counselling offered was effective in increasing the accuracy of risk perceptions without causing distress to those who initially underestimated their risk. It is worrying that inaccuracies persisted, particularly as the demand for service has since reduced the consultation time offered in this clinic. Further work is needed to evaluate alternative models of service delivery using more sophisticated methods of assessing understanding of risk.

References 18

1. 1.

   Claus E. B., Risch N., Thompson W. D. Genetic analysis of breast cancer in the cancer and steroid hormone study. Am J Hum Genet. 1991;48(2):232-242.

   Not in our library

2. 2.

   Cull A., Miller H., Porterfield T., Mackay J., Anderson E. D., Steel C. M., Elton R. A. The use of videotaped information in cancer genetic counselling: a randomized evaluation study. Br J Cancer. 1998;77(5):830-837.

   Not in our library10.1038/bjc.1998.135

3. 3.
   The impact of genetic counselling on risk perception in women with a family history of breast cancer · 1994

   No notice
4. 4.
   Perception of risk in women with a family history of breast cancer · 1993

   No notice
5. 5.

   Fallowfield L. J., Rodway A., Baum M. What are the psychological factors influencing attendance, non-attendance and re-attendance at a breast screening centre? J R Soc Med. 1990;83(9):547-551.

   Not in our library10.1177/014107689008300905

6. 6.

   Knight R. G., Waal-Manning H. J., Spears G. F. Some norms and reliability data for the State--Trait Anxiety Inventory and the Zung Self-Rating Depression scale. Br J Clin Psychol. 1983;22(Pt 4):245-249.

   Not in our library10.1111/j.2044-8260.1983.tb00610.x

7. 7.

   Lerman C., Daly M., Masny A., Balshem A. Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol. 1994;12(4):843-850.

   Not in our library10.1200/jco.1994.12.4.843

8. 8.

   Lerman C., Daly M., Sands C., Balshem A., Lustbader E., Heggan T., Goldstein L., James J., Engstrom P. Mammography adherence and psychological distress among women at risk for breast cancer. J Natl Cancer Inst. 1993;85(13):1074-1080.

   Not in our library10.1093/jnci/85.13.1074

9. 9.

   Lerman C., Kash K., Stefanek M. Younger women at increased risk for breast cancer: perceived risk, psychological well-being, and surveillance behavior. J Natl Cancer Inst Monogr. 1994;(16):171-176.

   Not in our library

10. 10.

    Lerman C., Lustbader E., Rimer B., Daly M., Miller S., Sands C., Balshem A. Effects of individualized breast cancer risk counseling: a randomized trial. J Natl Cancer Inst. 1995;87(4):286-292.

    Not in our library10.1093/jnci/87.4.286

11. 11.
    Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling · 1996

    No notice
12. 12.

    Marks G., Richardson J. L., Graham J. W., Levine A. Role of health locus of control beliefs and expectations of treatment efficacy in adjustment to cancer. J Pers Soc Psychol. 1986;51(2):443-450.

    Not in our library10.1037//0022-3514.51.2.443

13. 13.

    Miller S. M. Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol. 1987;52(2):345-353.

    Not in our library10.1037//0022-3514.52.2.345

14. 14.

    Morris T., Greer S. Psychological characteristics of women electing to attend a breast screening clinic. Clin Oncol. 1982;8(2):113-119.

    Not in our library

15. 15.

    Pharoah P. D., Day N. E., Duffy S., Easton D. F., Ponder B. A. Family history and the risk of breast cancer: a systematic review and meta-analysis. Int J Cancer. 1997;71(5):800-809.

    Not in our library10.1002/(sici)1097-0215(19970529)71:5<800::aid-ijc18>3.0.co;2-b

16. 16.

    Richards M., Ponder M. Lay understanding of genetics: a test of a hypothesis. J Med Genet. 1996;33(12):1032-1036.

    Not in our library10.1136/jmg.33.12.1032

17. 17.

    Steptoe A. An abbreviated version of the Miller Behavioral Style Scale. Br J Clin Psychol. 1989;28(Pt 2):183-184.

    Not in our library10.1111/j.2044-8260.1989.tb00830.x

18. 18.

    Thirlaway K., Fallowfield L., Nunnerley H., Powles T. Anxiety in women "at risk' of developing breast cancer. Br J Cancer. 1996;73(11):1422-1424.

    Not in our library10.1038/bjc.1996.269

Reads

A person counts once a day per paper. We keep no cookie and no address: a reader is a hash that changes every day. Any month under five reads shows no number.