“You Always Have It in the Back of Your Mind”—Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study

Claudia Stracke, Clarissa Lemmen, Kerstin Rhiem, Rita Schmutzler, Sibylle Kautz-Freimuth and Stephanie Stock
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Claudia Stracke: Institute of Health Economics and Clinical Epidemiology, Faculty of Medicine and University Hospital Cologne, University of Cologne, 50935 Cologne, Germany
Clarissa Lemmen: Institute of Health Economics and Clinical Epidemiology, Faculty of Medicine and University Hospital Cologne, University of Cologne, 50935 Cologne, Germany
Kerstin Rhiem: Center for Familial Breast and Ovarian Cancer, Center for Integrated Oncology (CIO), Faculty of Medicine and University Hospital Cologne, University of Cologne, 50937 Cologne, Germany
Rita Schmutzler: Center for Familial Breast and Ovarian Cancer, Center for Integrated Oncology (CIO), Faculty of Medicine and University Hospital Cologne, University of Cologne, 50937 Cologne, Germany
Sibylle Kautz-Freimuth: Institute of Health Economics and Clinical Epidemiology, Faculty of Medicine and University Hospital Cologne, University of Cologne, 50935 Cologne, Germany
Stephanie Stock: Institute of Health Economics and Clinical Epidemiology, Faculty of Medicine and University Hospital Cologne, University of Cologne, 50935 Cologne, Germany

IJERPH, 2022, vol. 19, issue 6, 1-20

Abstract: Hereditary breast cancer accounts for approximately 30% of newly diagnosed breast cancer (BC) cases. Pathogenic variants in moderate-risk BC genes (MBCG) differ from those in high-risk genes in terms of associated cancer risks, affected organs, and available preventive options. Little is known about how MBCG pathogenic variant carriers who have attended post-test genetic counseling perceive their situation, how they cope with their situation, and which support needs they might have. Problem-centered, guided, individual interviews were conducted with twelve women carrying pathogenic variants in MBCG. The interview analysis was based on Mayring’s qualitative content analysis. The women were between 29 and 59 years old and carried pathogenic variants in the risk genes CHEK2 (n = 8), ATM (n = 1), or PALB2 (n = 3). Women reported a wide range of feelings, both positive (relief, calmness) and negative (overwhelm, fear, grief, guilt). All women applied strategies of emotion-focused coping to deal with this lifelong situation. Appraisal and evaluation of the affected mother’s coping might influence the patient’s own behavior and coping style. These results could be used during and after post-test genetic counseling to provide more needs-oriented counseling, and to help women in adjusting to and coping with being a pathogenic variant carrier.

Keywords: genetic counseling; hereditary breast cancer; moderate-risk breast cancer genes; coping; qualitative research; support needs (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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