Psychosocial and Behavioural Outcomes of Women at risk of Breast and/or Ovarian Cancer

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Lesley Stafford, Fiona Judd, Bruce Mann, Geoff Lindeman, Maira Kentwell, Penny Gibson (Research Assistant)

Psychosocial data on women with inconclusive BRCA1/2 results, particularly those who are unaffected by cancer, and other women at high pedigree-based risk of breast and/or ovarian cancer but without access to a personal genetic test, are relatively scarce.

It is not well understood how these women perceive their risk of cancer, manage their disease risk or adjust psychologically in the context of a lack of established risk management guidelines. In this population, the current project investigates risk management practices for breast/ovarian cancer including screening, surgery and lifestyle modifications; and psychological morbidity in the form of anxiety, depression, and ovarian/breast cancer-specific worry.

As a secondary outcome, we are interested in decisions regarding reproduction. In addition to investigating how these outcomes to relate to each other and the role of clinical and demographic factors, variation in outcomes will be investigated within the context of motives for attending a familial cancer clinic, undergoing genetic testing or wishing to undergo such testing; understanding (recall and interpretation) of the inconclusive test result including general understanding of genetic risk status if personal testing has not been conducted; perceptions of breast/ovarian cancer risk; cognitive representations of breast/ovarian cancer (what having breast/ovarian cancer means or would mean to the individual); and trait neuroticism.

Women affected by cancer who have undergone genetic testing for BRCA1/2 mutations with inconclusive results at the RMH Familial Cancer Centre from 2005-2010 will be recruited. These women will be asked to recruit unaffected first degree female relatives to the study.

Women at high pedigree-based risk who have undergone genetic counselling at the FCC from 2009-2010 but who have not had a personal genetic test will also be recruited.

Women affected by cancer but who have not had genetic testing due to having a less than 10% probability of detecting a mutation from 2000-2010 are also to be recruited to the study.



Lesley Stafford
Centre for Women's Mental Health, Royal Women's Hospital, University of Melbourne Departments of Psychological Sciences
Fiona Judd
Centre for Women's Mental Health, Royal Women's Hospital and
Department of Psychiatry; University of Melbourne
Bruce Mann
Breast Service, Royal Women's and Royal Melbourne Hospitals
Geoff Lindeman
Familial Cancer Centre, Royal Melbourne Hospital
Walter and Eliza Hall Institute of Medical Research
Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne
Maira Kentwell
Familial Cancer Centre, Royal Melbourne Hospital
Penny Gibson
Centre for Women's Mental Health, Royal Women's Hospital

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