Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial.

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.