Kautz-Freimuth Sibylle, Shukri Arim, Stracke Claudia, Isselhard Anna, Berger-Höger Birte, Steckelberg Anke, Vitinius Frank, Dikow Nicola, Kiechle Marion, Meisel Cornelia, Wöckel Achim, von Mackelenbergh Marion Tina, Schmutzler Rita, Rhiem Kerstin, Stock Stephanie
Faculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital Cologne, Cologne, Germany.
Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
BMC Cancer. 2025 Jan 28;25(1):164. doi: 10.1186/s12885-025-13541-1.
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).
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.
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.
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.
DRKS-ID: DRKS00015527. Registered 30/10/2019.
积极参与医疗决策过程的患者可能会有更好的健康结果。本探索性研究旨在确定携带BRCA1/2致病变异（PVs）的健康女性在决策中偏好角色和实际角色的预测因素。
在德国六个中心招募了无乳腺癌和/或卵巢癌病史的携带BRCA1/2 PVs的女性。那些返回基线问卷（T1）的女性被随机分配到干预组或对照组（IG，CG）。干预组完成了决策指导（DC）计划，对照组接受标准护理。12周后进行第二次调查（T2）。进行了有序回归分析。社会人口统计学和与结果相关的基线变量用于确定（i）整个组中T1时期望角色的预测因素，以及（ii）对照组和干预组中T2时实际角色的预测因素。角色偏好通过控制偏好量表进行测量。
389名女性完成了基线问卷，191名被随机分配到对照组，198名被随机分配到干预组。在T1时，高决策冲突（OR 1.016，95%CI 1.001 - 1.023，p = 0.038）和消极的自我概念（OR 1.030，95%CI 1.008 - 1.054，p = 0.009）是偏好更被动角色的显著预测因素。在T2时，高基线决策冲突显著预测了对照组中采取更被动的角色，而在干预组中，基线决策冲突没有影响。此外，在干预组中，年轻（OR 1.049，95%CI 1.001 - 1.098，p = 0.044）和非学术教育（OR 0.46，95%CI 0.213 - 0.775，p = 0.006）被确定为采取更积极角色的显著预测因素。
高初始决策冲突被确定为携带BRCA1/2 PVs的女性在决策中偏好并采取被动角色的重要预测因素。参与DC计划可以抵消最初高决策冲突的消极影响，特别是支持年轻的PV携带者和教育程度较低的人采取积极角色。基于此，DC计划扩展了现有的咨询和护理概念，纳入了一种也能专门满足年轻女性和教育水平较低女性支持需求的措施。
DRKS-ID：DRKS00015527。2019年10月30日注册。
