Purpose: The aim of this study was to compare patient-reported outcomes (PROs) of BRCA1/2 mutation carriers, either after bilateral prophylactic mastectomy (BPM) or during breast surveillance, to improve shared decision-making in their cancer risk management. Methods: Unaffected BRCA1/2 mutation carriers at least one year after BPM followed by immediate breast reconstruction (BPM-IBR) or one year under surveillance were eligible. After informed consent, the Hospital Anxiety and Depression Scale (HADS) and BREAST-Q were administered and compared between the different strategies. PROs were also compared to available normative data. Results: Ninety-six participants were analyzed in this study and showed significant differences between strategies in age, age at genetic testing, and time since BPM or starting breast surveillance. All HADS scores were below 8 suggesting no signs of anxiety or depression in both groups. Higher mean ‘Q-physical well-being’ scores were reported by the surveillance group (81.78 [CI 76.99–86.57]) than the BPM group (76.96 [CI 73.16 – 80.75]; p = 0.011). Overall, for both questionnaires better scores were seen when compared to age-matched normative data. Conclusions: No signs of anxiety or depression were seen in the surveillance or BPM-IBR group. Slightly better mean BREAST-Q scores were seen for the surveillance group in comparison to BPM-IBR, except for ‘Q-psychological well-being’. The difference in ‘Q-physical well-being’ was significantly worse for BPM-IBR. Approaches to obtain longitudinal PROs and reference values should be explored in the future, which could add value to shared decision-making in regards to breast cancer risk management in this specific patient population.

Additional Metadata
Keywords BRCA mutation carriers, Breast cancer risk management, Patient-reported outcomes, Shared-decision making
Persistent URL dx.doi.org/10.1007/s12282-019-01033-7, hdl.handle.net/1765/122867
Journal Breast Cancer
Citation
van Egdom, L.S.E, de Kock, M.A. (M. A.), Apon, I. (I.), Mureau, M.A.M, Verhoef, C, Hazelzet, J.A, & Koppert, L.B. (L. B.). (2019). Patient-Reported Outcome Measures may optimize shared decision-making for cancer risk management in BRCA mutation carriers. Breast Cancer. doi:10.1007/s12282-019-01033-7