Decisions surrounding risk-reducing salpingo-oophorectomy (RRSO): experiences of BRCA-positive women

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Date
2020
Authors
Casalino, Selina
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Abstract
Women with pathogenic or likely pathogenic variants in BRCA1 or BRCA2 (“BRCA-positive”) have an increased risk of developing high grade serous ovarian cancer (HGSOC). The majority of HGSOC develops in the fallopian tubes and later spreads to the ovaries and peritoneal cavity. Therefore, BRCA-positive women may consider risk-reducing salpingo-oophorectomy (RRSO) to preventatively remove their ovaries and fallopian tubes. The Hereditary Gynecology Clinic (HGC) in Winnipeg specifically targets care to the unique needs of BRCA-positive women through an interdisciplinary team of gynecological oncologists, menopause specialists, and registered nurses. A mixed-methods study design was used to explore the decision-making processes of BRCA-positive women considering (or who completed) RRSO, and how this decision was influenced by experiences with healthcare providers at the HGC. BRCA-positive women without a previous diagnosis of HGSOC and who had previously received genetic counselling were recruited from the HGC and the Shared Health Program of Genetics & Metabolism. Forty-three women completed a survey and 15 completed an interview about their experiences and decisions surrounding RRSO. Surveys were analyzed to compare scores on validated scales related to decision-making and cancer-related worry. Interviews were transcribed, coded, and analyzed using a generic qualitative research approach called interpretive description, which is a commonly used to explore clinical phenomena. The results of this study demonstrated that BRCA-positive women face complex decisions that are intertwined with unique experiences. BRCA-positive women interpreted their HGSOC risk through a personalized “lens” of contextual factors that impacted perceptions about the practical and emotional implications of RRSO, and therefore the need for surgery. Mean scores on validated scales evaluating the HGC’s impact on decisional outcomes and preparedness for decision-making about RRSO were not significant, indicating that the HGC played a supportive role for BRCA-positive women rather than helping with decision-making itself. Strategies for improving support, decisional outcomes, and the overall experiences of BRCA-positive women attending the HGC are described.
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Ovarian Cancer, Hereditary Cancer, Genetic Testing, Genetic Counselling, Risk-reducing Surgery, BRCA, Decision-making, Mixed-methods, Experiences, Salpingo-oophorectomy
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