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Abstract P4-12-10: Cancer worry among healthy BRCA mutation carriers in Austria: A pilot study


 Background: Breast cancer risk in BRCA mutation carriers is up to 10 times higher compared to the general population. To support these patients, it is imperative to understand the worry that these patients face when they find out that they are a pathogenic mutation carrier. The aim of this study was to assess cancer worry among healthy BRCA mutation carriers using the 8-item cancer worry instrument. As there is no German version available, the aim of the study was two-fold. One was to translate the cancer worry scale (CWS) into German, and the second was to pilot the questionnaire to compare cancer worry between BRCA mutation carriers and gender. Methods: Healthy patients who underwent genetic counselling/testing at the Medical University of Vienna/Vienna General Hospital were randomly identified from 2015-2020. The English version of the 8-item CWS was forward and backwards translated by independent interpreters. A final version was composed together with medical doctors, a breast care nurse and a psychologist. The final version was piloted to a small group of healthy BRCA mutation carriers. A total of 63 potential participants [BRCA1: N=41 (65%), BRCA2: N=22 (35%); female: N=50 (79%), male: N=13 (21%)] were identified and invited to participate in the study. An invitation pack including an invitation letter, a patient consent form and the translated instrument was sent out in January 2021. Non-responders were followed up twice by phone calls. With the feedback, a final version was put together with another independent translator and confirmed by the committee. Results: Of 63 potential participants, 35 (female: 30, 85% vs. male: 5, 14%) returned the questionnaire after 2 follow-up calls, giving a response rate of 56%. Twenty-eight individuals (80%) carry a BRCA1 mutation, while remaining 7 (20%) were BRCA2 mutation carriers. All participants were native German speakers. Their age when completing the questionnaire differ significantly between BRCA1 (median age: 40 years; range: 26-68 years) and BRCA2 (median age: 51 years; range: 30-64 years) carriers (p=0.028). Almost half of all participants work full time (46%) and have an average or high income (69% = more than 18.000 Euros/year net income). It is noteworthy, that 57% underwent prophylactic surgery, such as mastectomy, adnexectomy, salpingectomy or both, mastectomy and adnexectomy. Of 35 respondents who completed the CWS, 27 (77%) reported high cancer worry. All male responders reported high cancer worry versus 22 females. Although no significant difference. was observed between gender, it is remarkable that men worry more about the possibility of family members developing cancer than their female counterparts (60% male vs 24% female). However, no one indicated that their worry interferes with their ability to conduct daily activities. Interestingly, those with average or high income report higher cancer worry than their counterparts (p= 0.024), and those who underwent risk-reducing surgery, regardless of type of surgery, were found to have significantly less cancer worry compared to those who did not undergo risk-reducing surgery (p=0.014). There were no differences observed in cancer worry between BRCA mutation group (81% BRCA1 vs 71% BRCA2, p=0.615), employment status (p=0.064), marital status (p=0.306), education (p=0.875), or being more physically active (p=0.715). Conclusion: Our results show that although men were less motivated to participate, they worry more than their female counterparts. In addition, those who with higher income also experience higher cancer worry. To our knowledge, this is the first time CWS has been translated to German and for use in the high-risk BRCA population. Our results are hampered by small sample size and remain to be validated in a larger study.
 Citation Format: Anna-Maria Parger, Daniela Muhr, Christian F Singer, Yen Y Tan. Cancer worry among healthy BRCA mutation carriers in Austria: A pilot study [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-10.