Title: Interventions to support female BRCA carriers who undergo risk-reducing surgery
Funder: Health and Social Care Research and Development Division (HSC R&D) of Public Health Agency, Northern Ireland

Abstract: Hereditary breast and ovarian cancer (HBOC) is a syndrome that involves an increased predisposition to breast cancer, ovarian cancer, or both. There is an autosomal dominant mode of inheritance so that an affected parent has a 50% chance of passing on a faulty gene to their children. The genes associated with HBOC, BRCA1 and BRCA2 have attracted much attention recently as individuals of public interest have revealed their personal decisions to undergo prophylactic mastectomy and salpingo-oophorectomy because of a family history of breast and ovarian cancer and their positive gene status. On the back of this media coverage referrals to genetics services showed a rise from May 2013 onwards, with almost 2.5-fold increase, in a consortium of over 30 UK breast cancer family history clinics and ten more genetics centres (Evans et al 2015). This exposure, alongside factors that have increased availability of genetic testing such as Next Generation Sequencing (NGS) and updated NICE guidelines (guideline 164, 2013) on genetic testing in HBOC families has influenced perception and uptake of testing. Women who carry a BRCA mutation are considered to have a significantly increased cumulative lifetime risk of developing breast cancer (40-85%) and (11-65%) risk of ovarian cancer (den Heijer et al, 2012). Following confirmation of a BRCA gene mutation women are faced with difficult choices of how best to manage their risk. Until recently options have been binary, either: high risk surveillance such as MRI plus mammogram on a yearly basis and ovarian screening via a blood test (CA125) and transvaginal ultrasound scan of the ovaries; or risk reducing surgery to their breasts and/or ovaries. Breast cancer requires mastectomy in at least one out of four women, and the possibility to prevent breast cancer in families with known genetic inheritance by prophylactic surgery increases the demand for this procedure (Rezai et al 2016). There are various influencing factors such as: age, child bearing decisions, efficacy of risk-reducing surgery and decision making. Given the high risks of breast and ovarian cancer associated with the BRCA genes, many women will choose to undergo risk –reducing mastectomy and /or risk-reducing bilateral salpingo-oopherectomy (RRBSO) to maximise survival. While such procedures have demonstrated increased overall survival for this population they are life –changing and can impact women adversely at a psychological, psychosexual and emotional level (Hartmann et al, 2016). Generally women regard risk-reducing surgery as a positive experience and have a sense of relief at the substantial cancer risk reduction and improvement in survival. Even so, studies have shown that despite the positive experience women experience a range of negative emotions and unexpected bodily sensations and reflect upon both positive and negative changes in their appearance. Women reported they had been unprepared for the lack of sensation in reconstructed breasts and/or the severity of menopausal symptoms along with the shock of their loss of libido which often had a negative impact upon sexuality (Hallowell et al 2012). There is a growing body of evidence to suggest that RRBSO for BRCA carriers affects sexual response, and hormone therapy appears to have limited benefit in alleviating sexual symptoms from surgical menopause in BRCA carriers (Brotto et al, 2012). Adverse psychological effects may vary depending on age and where women are in their life cycle. While the literature recognises these procedures have a significant impact at a psychological level and can affect quality of life, both at an individual level and that of the family, interventions to measure such concepts and outcomes have yet to be systematically reviewed. Genetic testing for women at high risk of inherited breast and ovarian cancer is carried out in a genetics clinic by either a consultant in genetic medicine or a genetic counsellor. While there are broad guidelines on what issues are covered pre and post counselling and a general patient pathway following a positive genetic test there are no formal guidelines on psychological intervention(s) pre or post risk-reducing surgery and the benefit/effectiveness of the intervention(s). Research has shown that there are interventions available to measure such concepts before and/or after risk reducing surgery (Brandberg et al,2008). Examples include the Sexuality Activity Questionnaire (SAQ), The Body Image Scale (BIS) The Hospital Anxiety and Depression (HAD) scale. The aim of this systematic review is to identify what psychological intervention women receive prior to undergoing risk reducing surgery and the effectiveness and outcomes of the intervention.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS