Abstract
This study assessed the sociodemographic, medical and psychological predictors of accuracy of perceived risk in women at increased genetic risk for ovarian cancer. Women participating in a large cohort study who were at increased risk of ovarian and fallopian tube cancer, had no personal history of cancer and had ≥1 ovary in situ at cohort enrolment, were eligible. Women completed self-administered questionnaires and attended an interview at enrolment. Of 2,868 women unaffected with cancer at cohort enrolment, 561 were eligible. 335 women (59.8 %) overestimated their ovarian cancer risk, while 215 women (38.4 %) accurately estimated their risk, and 10 (1.8 %) underestimated it. Women who did not know their mutation status were more likely to overestimate their risk (OR 1.74, 95 % CI 1.10, 2.77, p = 0.018), as were those with higher cancer-specific anxiety (OR 1.05, 95 % CI 1.02, 1.08, p < 0.001) and/or a mother who had been diagnosed with ovarian cancer (OR 1.98, 95 % CI 1.23, 3.18, p = 0.005). Amongst the group of women who did not know their mutation status, 63.3 % overestimated their risk and the mean perceived lifetime risk of developing ovarian cancer was 42.1 %, compared to a mean objective risk of 6.4 %. A large number of women at increased risk for ovarian cancer overestimate their risk. This is of concern especially in women who are at moderately increased risk only; for this sub-group of women, interventions are needed to reduce potentially unnecessary psychological distress and minimise engagement in unnecessary surgery or screening.
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References
National Breast Cancer Centre (2004) Clinical practice guidelines for the management of women with epithelial ovarian cancer. National Health and Medical Research Council, Sydney
Risch HA, McLaughlin JR, Cole DE et al (2006) Population BRCA1 and BRCA2 mutation frequencies and cancer penetrance: a kin–cohort study in Ontario. Can J Natl Cancer I 98(23):1694–1706
Alsop K, Fereday S, Meldrum C et al (2013) BRCA mutation frequency and patterns of treatment response in BRCA mutation positive women with ovarian cancer. J Clin Oncol 30(21):2654–2663
Antoniou A, Pharoah PD, Narod S et al (2003) Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet 72(5):1117–1130
Schildkraut JM, Thompson WD (1988) Familial ovarian cancer: a population-based case-control study. Am J Epidem 128:456–466
Australian Institute of Health and Welfare (AIHW), Australasian Association of Cancer Registries (AACR) (2004) Cancer in Australia 2001. AIHW Cat. No. CAN 23. Canberra, AIHW (Cancer Series no. 28)
Debeau L (2008) The cell of origin of ovarian epithelial tumours. Lancet 9:1191–1197
Cull A, Fry A, Rush R, Steel C (2001) Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic. Psycho-Oncology 84(5):594–599
Robinson GE, Rosen BP, Bradley LN et al (1997) Psychological impact of screening for familial ovarian cancer: reactions to initial assessment. Gynecol Oncol 65:197–205
Finch A, Metcalfe K, Lui J et al (2009) Breast and ovarian cancer risk perception after prophylactic salpingo-oophorectomy due to an inherited mutation in the BRCA1 or BRCA2 gene. Clin Genet 75:220–224
Leventhal H (1989) Emotional and behavioural responses. In: Johnston M, Wallace L (eds) Stress and medical procedures. Oxford Science and Medical, Oxford, pp 25–57
Gooding H, Organista K, Burack J, Bowles Biesecker B (2006) Genetic susceptibility testing from a stress and coping perspective. Soc Sci Med 62:1880–1890
Marteau T, Weinmann J (2006) Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 62:1360–1368
Glanz K, Lewis F, Rimer B (1997) Health behaviour and health education, 2nd edn. Jessey-Bass, San Francisco
Lerman C, Kash K, Stefanek M (1994) Younger women at increased risk for breast cancer: perceived risk, psychological well-being and surveillance behaviour. J Natl Cancer Inst 16:171–176
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
Lerman C, Daly M, Sands C et al (1993) Mammography adherence and psychological distress among women at risk for breast cancer. J Natl Cancer Inst 85(13):1074–1080
Andersen M, Peacock S, Nelson J et al (2002) Worry about ovarian cancer risk and use of ovarian cancer screening by women at risk for ovarian cancer. Gyencol Oncol 85:3–8
Schwartz MD, Kaufman E, Peshkin BN et al (2003) Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. J Clin Oncol 21(21):4034–4041
Stirling D, Evans G, Pichert G et al (2005) Screening for familial ovarian cancer: failure of current protocols to detect ovarian cancer at an early stage according to the international federation of gynecology and obstetrics system. J Clin Oncol 23:5588–5596
Gaarenstroom K, van der Hiel B, Tollenaar R et al (2006) Efficacy of screening women at high risk of hereditary ovarian cancer: results of an 11-year cohort study. Int J Gynecol Cancer 16(Suppl. 1):54–59
National Breast and Ovarian Cancer Centre (2009) Surveillance of women at high or potentially high risk of ovarian cancer: NBOCC position statement
Rebbeck TR, Lynch HT, Neuhausen SL et al (2002) Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med 346(21):1616–1622
Domcheck S, Weber B (2006) Clinical management of BRCA1 and BRCA2 mutation carriers. Oncogene 25:5825–5831
Phillips K-A, Butow P, Stewart A et al (2005) Predictors of participation in clinical and psychosocial follow up of the kConFab breast cancer family study. Fam Cancer 4(2):105–113
Kathleen Cuningham Consortium for Research into Familial Breast Cancer: KConFab. http://www.kconfab.org
Mann G, Thorne H, Balleine R et al (2006) Analysis of cancer risk and BRCA1 and BRCA2 mutation prevalence in the kConFab familial breast cancer resource. Breast Canc Res 8:R12
Wakefield C, Thorne H, Kirk J, Niedermayr E, Doolan E, Tucker K (2013) Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer. Genet Med 15(3):187–194
Horowitz M, Wilner N, Alvarez W (1979) Impact of Events Scale: a measure of subjective stress. Psychosom Med 41:209–218
Cella DF, Mahon SM, Donovan MI (1990) Cancer recurrence as a traumatic event. Behav Med 16(1):15–22
Thewes B, Meiser B, Hickie I (2001) Psychometric properties of the Impact of Event Scale amongst women at increased risk for hereditary breast cancer. Psycho-Oncology 10(6):459–468
Scheier MF, Carver CS (1985) Optimism, coping and health: assessment and implications of generalized outcome expectancies. Health Psychol 4(3):219–247
Broadhead W, Gehlbach S, De Gruy F, Kaplan B (1988) The Duke-UNC Functional Social Support Questionnaire. Med Care 26(7):709–722
Meiser B, Butow P, Barratt A et al (1999) Attitudes to prophylactic oophorectomy and screening utilization in women at increased risk of developing hereditary breast/ovarian cancer. Gynecol Oncol 75:122–129
Antoniou A, Cunningham A, Peto J et al (2008) The BOADICEA model of genetic susceptibility to breast and ovarian cancers: updates and extensions. Br J Cancer 98:1457–1466. doi:10.1038/sj.bjc.6604305
Hosmer D, Lemeshow S (2000) Applied logistic regression, 2nd edn. Wiley, Toronto
Meiser B, Price M, Butow P et al (2013) Psychological factors and uptake of risk-reducing salpingo-oophorectomy in women at high risk for ovarian cancer in the Kathleen Cuningham Consortium for Research into Breast Cancer. Fam Cancer 12(1):101–109
Chalmers K, Luker K, Leinster S, Ellis E, Booth K (2001) Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire. J Adv Nurs 35(4):497–507
Goldberg J, Piver M, Jishi M, Blumenson L (1997) Age at onset of ovarian cancer in women with a strong family history of ovarian cancer. Gynecol Oncol 66:3–9
Katapodi M, Lee K, Facione N, Dodd M (2004) Predictors of perceived breast cancer risk and the relation between preceived risk and breast cancer screening: a meta-analytic review. Prev Med 38:388–402
Butow P, Lobb E, Meiser B, Barratt A, Tucker K (2000) Psychological aspects of genetic testing and counselling in women at increased risk of developing breast cancer: a summary of the literature for clinicians. Med J Austr 172:126–129
Meiser B, Butow P, Price M et al (2003) Attitudes to prophylactic strategies in Australian women at increased risk for breast cancer. J Women Health 12(8):769–778
Meiser B, Butow P, Barratt A et al (2001) Risk perceptions and knowledge of breast cancer genetics in women at increased risk of developing hereditary breast cancer. Psychol Health 16(3):297–311
Hurley KE, Miller SM, Costalas JW, Gillespie D, Daly MB (2001) Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Women Health 10(2):189–199
Fry A, Rush R, Busby-Earle C, Cull A (2001) Deciding about prophylactic oophorectomy: what is important to women at increased risk of ovarian cancer? Prev Med 33(6):578
Lobb EA, Butow PN, Moore A et al (2006) Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: a pilot study. J Genet Counsel 15(5):393–405
Finch A, Metcalfe K, Lui J et al (2009) Breast and ovarian cancer risk perception after prophylactic salpingo-oophorectomy due to an inherited mutation in the BRCA1 or BRCA2 gene. Clin Genet 75(220–224):220
Stahlbom A, Johansson H, Liljegren A, von Wachenfeldt A, Arver B (2012) Evaluation of the BOADICEA risk assessment model in women with a family history of breast cancer. Fam Cancer 11:33–40
Ford D, Easton D, Stratton M et al (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Hum Genet 62:676–689
King M, Marks J, Mandell J, New York Breast Cancer Study Group (2003) Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science 302:643–646
Meiser B, Halliday J (2002) What is the impact of genetic counseling in women at increased risk of developing hereditary breast cancer: a meta-analytic review. Soc Sci Med 54(10):1463–1470
Smerecnik CMR, Mesters I, Verweij E, de Vries NK, de Vries H (2009) A systematic review of the impact of genetic counselling on risk perception accuracy. J Genet Counsel 18:217–228. doi:10.1007/s10897-008-9210-z
Acknowledgments
We are very grateful to the many families who contribute to kConFab. We also wish to thank Heather Thorne, Eveline Niedermayr, all the kConFab research nurses and staff of the Family Cancer Clinics for their contributions to the kConFab resource. kConFab is supported by grants from the National Breast Cancer Foundation, the National Health and Medical Research Council (NHMRC), the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. The kConFab Follow-Up Study was funded from 2001 to 2009 by the NHMRC and currently by the National Breast Cancer Foundation and Cancer Australia No. 628333. This study was funded by NHMRC Project Grants No. 153824, 301930, 145684 and 288704, 454508. Prof Phyllis Butow receives a Principal Research Fellowship from NHMRC, Associate Professor Bettina Meiser receives a Career Development Award Level 2 from the NHMRC. Prof. Kelly-Anne Phillips is a National Breast Cancer Foundation Practitioner Fellow.
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This study was conducted on behalf of the kConFab investigators.
The kConFab psychosocial group includes the following in addition to the authors listed above: Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia (B. Bennett); Northern Sydney and Central Coast Area Health Service, Sydney, Australia (C. Tennant). The kConFab clinical follow-up group includes the following in addition to authors listed above: Centre for Molecular, Environmental, Genetic and Analytic Epidemiology, School of Global and Population Health, The University of Melbourne, Victoria, Australia (J. L. Hopper, R. L. Milne); Division of Cancer Medicine, Peter MacCallum Cancer Centre, Victoria, Australia (P. Weideman, L. Stanhope, S. Picken); Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia (M. L. Friedlander); Familial Cancer Centre, Department of Medicine, University of Utah, Salt Lake City, Utah (D. Goldgar).
This study has been approved by the appropriate ethics committee and has therefore been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.
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Meiser, B., Price, M.A., Butow, P.N. et al. Misperceptions of ovarian cancer risk in women at increased risk for hereditary ovarian cancer. Familial Cancer 13, 153–162 (2014). https://doi.org/10.1007/s10689-013-9687-y
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DOI: https://doi.org/10.1007/s10689-013-9687-y