Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial
Abstract Background Patients who actively engage in their medical decision-making processes can experience better health outcomes. This exploratory study aimed to identify predictors of preferred and actual roles in decision-making in healthy women with BRCA1/2 pathogenic variants (PVs). Methods Wom...
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2025-01-01
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| Online Access: | https://doi.org/10.1186/s12885-025-13541-1 |
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| author | Sibylle Kautz-Freimuth Arim Shukri Claudia Stracke Anna Isselhard Birte Berger-Höger Anke Steckelberg Frank Vitinius Nicola Dikow Marion Kiechle Cornelia Meisel Achim Wöckel Marion Tina von Mackelenbergh Rita Schmutzler Kerstin Rhiem Stephanie Stock |
| author_facet | Sibylle Kautz-Freimuth Arim Shukri Claudia Stracke Anna Isselhard Birte Berger-Höger Anke Steckelberg Frank Vitinius Nicola Dikow Marion Kiechle Cornelia Meisel Achim Wöckel Marion Tina von Mackelenbergh Rita Schmutzler Kerstin Rhiem Stephanie Stock |
| author_sort | Sibylle Kautz-Freimuth |
| collection | DOAJ |
| description | Abstract Background Patients who actively engage in their medical decision-making processes can experience better health outcomes. This exploratory study aimed to identify predictors of preferred and actual roles in decision-making in healthy women with BRCA1/2 pathogenic variants (PVs). Methods Women with BRCA1/2 PVs without a history of breast and/or ovarian cancer were recruited in six centres across Germany. Those returning the baseline questionnaires (T1) were randomly assigned to the intervention or control group (IG, CG). The IG completed a decision-coaching (DC) programme, the CG received standard care. A second survey (T2) followed after 12 weeks. Ordinal regression analyses were performed. Sociodemographic and outcome-related baseline variables were used to identify predictors of (i) desired role at T1 in the total group and (ii) actual role at T2 in the CG and the IG. Role preferences were measured with the Control Preferences Scale. Results 389 women completed the baseline questionnaires, 191 were randomised to the CG and 198 to the IG. At T1, high decisional conflict (OR 1.016, 95% CI 1.001–1.023, p = 0.038) and a negative self-concept (OR 1.030, 95% CI 1.008–1.054, p = 0.009) were significant predictors for preferring a more passive role. At T2, high baseline decisional conflict significantly predicted taking a more passive role in the CG, whereas in the IG, baseline decisional conflict showed no influence. Furthermore, in the IG, younger age (OR 1.049, 95% CI 1.001–1.098, p = 0.044) and a non-academic education (OR 0.46, 95% CI 0.213–0.775, p = 0.006) were identified as significant predictors for taking a more active role. Conclusions High initial decisional conflict was identified as an important predictor for preferring and taking a passive role in decision-making among women with BRCA1/2 PVs. Participating in the DC programme can counteract passivating effects of an initially high decisional conflict and particularly support younger PV carriers and those with lower educational status to take an active role. With this profile, the DC programme expands the existing counselling and care concept to include a measure that can also specifically cover the support needs of younger women and those with a lower education level. Trial registration DRKS-ID: DRKS00015527. Registered 30/10/2019. |
| format | Article |
| id | doaj-art-2736125b208948158a782540614299f2 |
| institution | Kabale University |
| issn | 1471-2407 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
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| series | BMC Cancer |
| spelling | doaj-art-2736125b208948158a782540614299f22025-02-02T12:28:38ZengBMCBMC Cancer1471-24072025-01-0125111110.1186/s12885-025-13541-1Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trialSibylle Kautz-Freimuth0Arim Shukri1Claudia Stracke2Anna Isselhard3Birte Berger-Höger4Anke Steckelberg5Frank Vitinius6Nicola Dikow7Marion Kiechle8Cornelia Meisel9Achim Wöckel10Marion Tina von Mackelenbergh11Rita Schmutzler12Kerstin Rhiem13Stephanie Stock14Faculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital CologneFaculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital CologneFaculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital CologneFaculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital CologneInstitute for Health and Nursing Science, Martin Luther University Halle–WittenbergInstitute for Health and Nursing Science, Martin Luther University Halle–WittenbergFaculty of Medicine, University of Cologne and Department of Psychosomatics and Psychotherapy, University Hospital CologneInstitute for Human Genetics, University Hospital HeidelbergDepartment of Obstetrics and Gynecology, TUM University Hospital, Technical University of MunichDepartment of Gynecology and Obstetrics, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität DresdenDepartment of Obstetrics and Gynecology, University Hospital WürzburgDepartment of Obstetrics and Gynecology, University Hospital Schleswig–HolsteinFaculty of Medicine, University of Cologne and Center for Familial Breast and Ovarian Cancer, University Hospital CologneFaculty of Medicine, University of Cologne and Center for Familial Breast and Ovarian Cancer, University Hospital CologneFaculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital CologneAbstract Background Patients who actively engage in their medical decision-making processes can experience better health outcomes. This exploratory study aimed to identify predictors of preferred and actual roles in decision-making in healthy women with BRCA1/2 pathogenic variants (PVs). Methods Women with BRCA1/2 PVs without a history of breast and/or ovarian cancer were recruited in six centres across Germany. Those returning the baseline questionnaires (T1) were randomly assigned to the intervention or control group (IG, CG). The IG completed a decision-coaching (DC) programme, the CG received standard care. A second survey (T2) followed after 12 weeks. Ordinal regression analyses were performed. Sociodemographic and outcome-related baseline variables were used to identify predictors of (i) desired role at T1 in the total group and (ii) actual role at T2 in the CG and the IG. Role preferences were measured with the Control Preferences Scale. Results 389 women completed the baseline questionnaires, 191 were randomised to the CG and 198 to the IG. At T1, high decisional conflict (OR 1.016, 95% CI 1.001–1.023, p = 0.038) and a negative self-concept (OR 1.030, 95% CI 1.008–1.054, p = 0.009) were significant predictors for preferring a more passive role. At T2, high baseline decisional conflict significantly predicted taking a more passive role in the CG, whereas in the IG, baseline decisional conflict showed no influence. Furthermore, in the IG, younger age (OR 1.049, 95% CI 1.001–1.098, p = 0.044) and a non-academic education (OR 0.46, 95% CI 0.213–0.775, p = 0.006) were identified as significant predictors for taking a more active role. Conclusions High initial decisional conflict was identified as an important predictor for preferring and taking a passive role in decision-making among women with BRCA1/2 PVs. Participating in the DC programme can counteract passivating effects of an initially high decisional conflict and particularly support younger PV carriers and those with lower educational status to take an active role. With this profile, the DC programme expands the existing counselling and care concept to include a measure that can also specifically cover the support needs of younger women and those with a lower education level. Trial registration DRKS-ID: DRKS00015527. Registered 30/10/2019.https://doi.org/10.1186/s12885-025-13541-1Activity in decision-makingActual role in decision-makingBRCA1/2 pathogenic variantsControl preferencesDecisional conflictDesired role in decision-making |
| spellingShingle | Sibylle Kautz-Freimuth Arim Shukri Claudia Stracke Anna Isselhard Birte Berger-Höger Anke Steckelberg Frank Vitinius Nicola Dikow Marion Kiechle Cornelia Meisel Achim Wöckel Marion Tina von Mackelenbergh Rita Schmutzler Kerstin Rhiem Stephanie Stock Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial BMC Cancer Activity in decision-making Actual role in decision-making BRCA1/2 pathogenic variants Control preferences Decisional conflict Desired role in decision-making |
| title | Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial |
| title_full | Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial |
| title_fullStr | Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial |
| title_full_unstemmed | Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial |
| title_short | Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial |
| title_sort | factors influencing role preferences in decision making of healthy women with brca1 2 pathogenic variants subanalysis from a randomised controlled decision coaching trial |
| topic | Activity in decision-making Actual role in decision-making BRCA1/2 pathogenic variants Control preferences Decisional conflict Desired role in decision-making |
| url | https://doi.org/10.1186/s12885-025-13541-1 |
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