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, Kerstin Rhiem
{"title":"对患有 BRCA1/2 致病变异的健康女性进行决策辅导--EDCP-BRCA 随机对照试验的结果。","authors":"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, Kerstin Rhiem","doi":"10.3238/arztebl.m2024.0049","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Women 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.</p><p><strong>Methods: </strong>Healthy 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).</p><p><strong>Results: </strong>Of 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.</p><p><strong>Conclusion: </strong>This DC program can help women who are carriers of BRCA1/2 PV participate actively in decision-making with regard to preventive measures.</p>","PeriodicalId":11258,"journal":{"name":"Deutsches Arzteblatt international","volume":" Forthcoming","pages":"393-400"},"PeriodicalIF":6.5000,"publicationDate":"2024-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11460264/pdf/","citationCount":"0","resultStr":"{\"title\":\"Decision Coaching for Healthy Women With BRCA1/2 Pathogenic Variants—Findings of the Randomized Controlled EDCP-BRCA Trial.\",\"authors\":\"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, Kerstin Rhiem\",\"doi\":\"10.3238/arztebl.m2024.0049\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Women 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.</p><p><strong>Methods: </strong>Healthy 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).</p><p><strong>Results: </strong>Of the 413 women who were recruited, 389 returned the T1 questionnaires. 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Decision Coaching for Healthy Women With BRCA1/2 Pathogenic Variants—Findings of the Randomized Controlled EDCP-BRCA Trial.
Background: Women 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.
Methods: Healthy 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).
Results: Of 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.
Conclusion: This DC program can help women who are carriers of BRCA1/2 PV participate actively in decision-making with regard to preventive measures.
期刊介绍：
Deutsches Ärzteblatt International is a bilingual (German and English) weekly online journal that focuses on clinical medicine and public health. It serves as the official publication for both the German Medical Association and the National Association of Statutory Health Insurance Physicians. The journal is dedicated to publishing independent, peer-reviewed articles that cover a wide range of clinical medicine disciplines. It also features editorials and a dedicated section for scientific discussion, known as correspondence.
The journal aims to provide valuable medical information to its international readership and offers insights into the German medical landscape. Since its launch in January 2008, Deutsches Ärzteblatt International has been recognized and included in several prestigious databases, which helps to ensure its content is accessible and credible to the global medical community. These databases include:
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By being indexed in these databases, Deutsches Ärzteblatt International's articles are made available to researchers, clinicians, and healthcare professionals worldwide, contributing to the global exchange of medical knowledge and research.
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