• Stephanie Stock, Anna Isselhard, Arim Shukri, Sibylle Kautz-Freimuth, Marcus Redaèlli, Birte Berger-Höger, Nicola Dikow, Marion Kiechle, Juliane Köberlein-Neu, Cornelia Meisel, Rita Schmutzler, Anke Steckelberg, Marion Tina van Mackelenbergh, Frank Vitinius, Achim Wöckel, and Kerstin Rhiem.
• Faculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, Cologne; Faculty of Medicine, University of Cologne and Center for Familial Breast and Ovarian Cancer, University Hospital Cologne; Faculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, Cologne; Institute for Public Health and Healthcare Research, University of Bremen; Institute for Human Genetics, University Hospital Heidelberg; Department of Obstetrics and Gynecology, Rechts der Isar Hospital Technical University of Munich; Schumpeter School of Business and Economics, Competence Center for Health Economics and Healthcare Research, University of Wuppertal; Department of Obstetrics and Gynecology, Carl Gustav Carus University Hospital, Dresden; Faculty of Medicine, University of Cologne and Center for Familial Breast and Ovarian Cancer, University Hospital Cologne; Institute for Health and Healthcare Science, Martin Luther University of Halle-Wittenberg, Halle (Saale); Department of Obstetrics and Gynecology, University Hospital Schleswig-Holstein, Kiel; Faculty of Medicine, University of Cologne and Department of Psychosomatics and Psychotherapy, University Hospital Cologne; Department of Psychosomatic Medicine, Robert Bosch Hospital, Stuttgart; Department of Obstetrics and Gynecology, University Hospital Würzburg.
• Dtsch Arztebl Int. 2024 Jun 14; 121 (12): 393400393-400.

BackgroundWomen with pathogenic variants (PV) of the genes BRCA1/2 have a choice of preventive options. To help these women decide for themselves, we developed and implemented a decision coaching (DC) program and evaluated it for congruence between the participants' desired and actual roles in decision-making.MethodsHealthy BRCA1/2 PV carriers (25-60 years of age) were recruited at six centers in Germany. Those who returned baseline (T1) questionnaires were randomly assigned to the intervention group (IG) or the control group (CG). The IG attended a nurse-led DC program. The primary outcome was congruence between the participants' preferred and actual roles in decision-making. The secondary outcomes were an active role, satisfaction, decisional conflict, and knowledge. The follow-up questionnaires were administered at 12 weeks (T2) and 6 months (T3).ResultsOf the 413 women who were recruited, 389 returned the T1 questionnaires. At T2, the groups did not differ significantly in congruence between their preferred and actual roles in decision-making (0.12, 95% confidence interval [-0.03; 0.28], p = 0.128), with a slightly higher congruence in the CG. Women in both groups played a more active role at T2 than their stated preference at T1, with a notably higher percentage in the IG than the CG (IG: 40%, CG: 24.4% [-25.1; -6.1]). IG participants were more satisfied with their role and had less decisional conflict and greater knowledge.ConclusionThis DC program can help women who are carriers of BRCA1/2 PV participate actively in decision-making with regard to preventive measures.

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