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A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk

British Journal of Cancer volume 86, pages 233–238 (2002)Cite this article

Abstract

The aim was to compare the psychological impact of a multidisciplinary specialist genetics service with surgical provision in women at high risk and those at lower risk of familial breast cancer. Women (n=735) were randomized to a surgical consultation with (trial group) or without (control group) specialist genetic risk assessment and the possible offer of presymptomatic genetic testing. Participants completed questionnaires before and immediately after the consultation to assess anxiety, cancer worry, perceived risk, interest in genetic testing and satisfaction. Responses of subgroups of women stratified by clinicians as low, moderate, or high risk were analyzed. There were no significant main effects of study intervention on any outcome variable. Regardless of risk information, there was a statistically significant reduction in state anxiety (P<0.001). Reductions in cancer worry and perceived risk were significant for women at low or moderate risk (P<0.001) but not those at high risk, and satisfaction was significantly lower in the high risk group (P<0.001). In high risk women who received specialist genetic input, there was a marginally significant trend towards increased perceived risk. The effect of risk information on interest in genetic testing was not significant. Breast care specialists other than geneticists might provide assessments of breast cancer risk, reassuring women at reduced risk and targeting those at high risk for specialist genetic counselling and testing services. These findings are discussed in relation to the existing UK Calman-Hine model of service delivery in cancer genetics.

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References

  • Brain K, Gray J, Norman P, Parsons E, Clarke A, Rogers C, Mansel R, Harper P (2000a) Why do women attend familial breast cancer clinics? J Med Genet 37: 197–202

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Brain K, Gray J, Norman P, France E, Anglim C, Barton G, Parsons E, Clarke A, Sweetland H, Tischkowitz M, Myring J, Stansfield K, Webster D, Gower-Thomas, Daoud R, Gateley C, Monypenny I, Singhal H, Branston L, Sampson J, Roberts E, Newcombe R, Cohen D, Rogers C, Mansel R, Harper P (2000b) Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 92: 1345–1351

    Article  CAS  PubMed  Google Scholar 

  • Brain K, Norman P, Gray J, Mansel R (1999) Anxiety and adherence to breast self-examination in women with a family history of breast cancer. Psychosom Med 61: 181–187

    Article  CAS  PubMed  Google Scholar 

  • British Association of Surgical Oncology Guidelines (1998) Eur J Surg Oncol 24: 464–476

  • Broadstock M, Michie S, Gray J, Mackay J, Marteau TM (2000) The psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer – A pilot study. Psycho-Oncol 9: 537–548

    Article  CAS  Google Scholar 

  • Campbell H, Mackay J, Porteous M (1995) The future of breast and ovarian cancer clinics. Br Med J 311: 1584–1585

    Article  CAS  Google Scholar 

  • Champion VL (1984) Instrument development for health belief model constructs. Adv Nurs Sci 6: 73–85

    Article  CAS  Google Scholar 

  • Claus EB, Risch NJ, Thompson WD (1991) Genetic analysis of breast cancer in the cancer and steroid hormone study. Am J Hum Genet 48: 232–242

    CAS  PubMed  PubMed Central  Google Scholar 

  • Cull A, Anderson ED, Campbell S, Mackay J, Smyth E, Steel M (1999) The impact of genetic counselling about breast cancer risk on women's risk perceptions and levels of distress. Br J Cancer 79: 501–508

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Durfy SJ, Bowen DJ, McTiernan A, Sporleder J, Burke W (1999) Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiol Biomarkers Prevent 8: 369–375

    CAS  Google Scholar 

  • Eccles DM, Evans DGR, Mackay J on behalf of the UK Cancer Family Study Group (2000) Guidelines for a genetic risk based approach to advising women with a family history of breast cancer. J Med Genet 37: 203–209

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Emery J, Walton R, Murphy M, Austoker J, Yudkin P, Chapman C, Coulson A, Glasspool D, Fox J (2000) Computer support for interpreting family histories of breast and ovarian cancer in primary care: Comparative study with simulated cases. Br Med J 321: 28–32

    Article  CAS  Google Scholar 

  • Evans DG, Burnell LD, Hopwood P, Howell A (1993) Perception of risk in women with a family history of breast cancer. Br J Cancer 67: 612–614

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Evans DGR, Fentiman IS, Mcpherson K, Asbury D, Ponder BAS, Howell A, Narod SA (1994) Familial breast cancer. Br Med J 308: 183–187

    Article  CAS  Google Scholar 

  • Fallowfield LJ, Rodway A, Baum M (1990) What are the psychological factors influencing attendance and non-attendance at a breast screening centre? J Royal Soc Med 83: 547–551

    Article  CAS  Google Scholar 

  • Gray J, Brain K, Anglim C, Barton G, Branston L, Parsons E, Clarke A, Sampson J, Roberts E, Newcombe R, Norman P, Cohen D, Rogers C, Mansel R, Harper P (2000) A model protocol evaluating the introduction of genetic assessment for women with a family history of breast cancer. J Med Genet 37: 192–196

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Hopwood P, Keeling F, Long A, Pool C, Evans G, Howell A (1998) Psychological support needs of women at high genetic risk of breast cancer: Some preliminary indicators. Psycho-oncol 7: 402–412

    Article  CAS  Google Scholar 

  • Jacobsen PB, Heddis B, Valdimarsdottir KL, Brown MS, Offit K (1997) Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med 59: 459–466

    Article  CAS  PubMed  Google Scholar 

  • Kash KM, Holland JC, Halper MS, Miller DG (1992) Psychological distress and surveillance behaviours of women with a family history of breast cancer. J Natl Cancer Inst 84: 24–30

    Article  CAS  PubMed  Google Scholar 

  • Kelly PT (1999) Will cancer risk assessment and counselling services survive genetic testing? Acta Oncologica 38: 743–746

    Article  CAS  PubMed  Google Scholar 

  • Kent G, Howie H, Fletcher M, Newbury-Ecob R, Hosie K (2000) The relationship between perceived risk, thought intrusiveness and emotional well-being in women receiving counselling for breast cancer risk in a family history clinic. Br J Health Psychol 5: 15–26

    Article  Google Scholar 

  • King M, Rowell S, Love SM (1993) Inherited breast and ovarian cancer: What are the risks? What are the choices? JAMA 269: 1975–1980

    Article  CAS  PubMed  Google Scholar 

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

    Article  CAS  PubMed  Google Scholar 

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

    Article  CAS  PubMed  Google Scholar 

  • Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C, Narod S, Lynch HT (1998) 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 16: 1650–1654

    Article  CAS  PubMed  Google Scholar 

  • Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Boney G, Gold K, Trock B, Main D, Lynch J, Fulmore C, Snyder C, Lemon SJ, 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

    Article  CAS  PubMed  Google Scholar 

  • Lerman C, Seay J, Balshem A, Audrain J (1995) Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet 57: 385–392

    Article  CAS  PubMed  Google Scholar 

  • Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A (1991a) Psychological side effects of breast cancer screening. Health Psychol 10: 259–267

    Article  CAS  PubMed  Google Scholar 

  • Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF (1991b) Psychological and behavioural implications of abnormal mammograms. Ann Intern Med 114: 657–661

    Article  CAS  PubMed  Google Scholar 

  • Lloyd S, Watson M, Waites B, Meyer L, Eeles R, Ebbs S, Tylee A (1996) Familial breast cancer: A controlled study of risk perception, psychological morbidity, and health beliefs in women attending for genetic counselling. Br J Cancer 74: 482–487

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Petersen GM, Larkin E, Codori AM, Wang C-Y, Booker SV, Bacon J, Giardiello FM, Boyd PA (1999) Attitudes towards colon cancer gene testing: Survey of relatives of colon cancer patients. Cancer Epidemiol Biomarkers Prevent 8: 337–344

    CAS  Google Scholar 

  • Report by the expert advisory group on cancer to the Chief Medical Officers of England and Wales (1995) A Policy Framework for Commissioning Cancer Services. Department of Health and Welsh Office: London

  • Report of a working group on cancer genetics services (1998) Genetics and Cancer Services. Department of Health: London

  • Shiloh S, Avdor O, Goodman RM (1990) Satisfaction with Genetic counselling: Dimensions measurement. Am J Med Genet 37: 522–529

    Article  CAS  PubMed  Google Scholar 

  • Spielberger CD (1983) Manual of the State-Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychologists Press

    Google Scholar 

  • Watson M, Duvivier V, Wade Walsh M, Ashley S, Davidson J, Papaikonomou M (1998) Family history of breast cancer: what do women understand and recall about their genetic risk? J Med Genet 35: 731–738

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Watson EK, Shickle D, Qureshi N, Emery J, Austoker J (1999) The ‘new genetics’ and primary care: GPs' views on their role and their educational needs. Fam Pract 16: 420–425

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

We wish to thank all the women who participated in the TRACE project and the staff who supported it. The study was funded by the Medical Research Council, National Assembly for Wales, NHS R&D (Wales), and Imperial Cancer Research Fund. Dr Jonathon Gray is supported by Tenovus, the cancer charity.

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Authors and Affiliations

  1. Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff, CF14 4XN, UK

    K Brain & P Harper

  2. Department of Psychology, Sheffield University, Western Bank, Sheffield, S10 2TP, UK

    P Norman

  3. Institute of Medical Genetics, University Hospital of Wales NHS Healthcare Trust, Heath Park, Cardiff, CF14 4XN, UK

    J Gray

  4. Breast Test Wales, 18 Cathedral Road, Cardiff, CF1 9LJ, UK

    C Rogers

  5. Department of Surgery, University of Wales College of Medicine, Heath Park, Cardiff, CF14 4XN, UK

    R Mansel

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  1. K Brain
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  2. P Norman
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  4. C Rogers
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  5. R Mansel
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  6. P Harper
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Correspondence to J Gray.

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Brain, K., Norman, P., Gray, J. et al. A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk. Br J Cancer 86, 233–238 (2002). https://doi.org/10.1038/sj.bjc.6600051

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