Risk perception in healthy women with a family history of breast cancer: results of a prospective observational study

Objective The calculation and communication of breast cancer (BC) risks are becoming increasingly important for decision-making on preventive measures in women with a family history of breast cancer. More confined risk predictions now include polygenic risk scores (PRS) and non-genetic risk factors, intricating the understanding of risks. We evaluated potential discrepancies between clinical risk assessment and risk perception.

Material and methods Between 11/2019 and 02/2020, 214 women with a familial history of BC were included in a prospective observational study at their first counselling appointment at the Cologne Centre for Familial Breast and Ovarian Cancer. Questionnaires on risk perception were completed at two time points (T1: at study entry, T2: 2 months after disclosure of test result). 10-year BC risks were calculated based on TruRisk®-gene panel result, PRS and non-genetic risk factors using the risk calculation tool CanRisk© (BOADICEA algorithm).

Results Data from 198 women was analyzed (7.5% dropouts). At T1, 122 women (61.6%) overestimated, three women underestimated and 37 women (18.7%) could not specify their 10-year BC risk. Two months after disclosure of genetic test results (T2), 80 women (40.4%) still overestimated, 22 (11.1%) could still not specify their risk while 92 women (46.5%) assessed it correctly (T1: 35; 17.7%).

Summary Communicating BC risks leads to more accurate risk perception and reduces overestimation of risks. However, more than half of the participants still displayed an incorrect or absent understanding of their risk. Better communication strategies are warranted to allow informed decision making on the uptake of preventive measures.

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Artikel online veröffentlicht:
01. Juni 2021