Determinants and implications of reluctance to disclose personal values in the shared decision-making process for kidney replacement therapy

BACKGROUND: In selecting kidney replacement therapy (KRT), shared decision-making assumes patients are willing to disclose personal values and preferences. However, the prevalence, reasons, and implications of patients' reluctance to share such information remain unclear. This study examined these aspects using a convergent mixed-methods design. METHODS: A nationwide cross-sectional survey was conducted among Japanese adults with stage 5 chronic kidney disease who had selected a KRT modality at one of 49 facilities. Factors associated with reluctance to share were analyzed using ordinal logistic regression. The association between reluctance and the extent of shared decision-making, assessed by the CollaboRATE scale, was examined using a general linear model. Qualitative content analysis of free-text responses identified reasons and themes underlying reluctance. RESULTS: Among 474 patients analyzed, 111 (24.2%) reported being very or somewhat reluctant to share. Compared with those not at all reluctant, patients who were minimally and very/somewhat reluctant had lower CollaboRATE scores (-5.12 and -11.39 points, respectively). Greater trust in the primary nephrologist was protective against reluctance, whereas depressive symptoms promoted it. Qualitative analyses identified five themes: Privacy Sensitivity Diversity, Decision-Making Attitudes and Preferences, and Personality and Psychological Adaptation in Decision-Making shaped the direction of reluctance, while Priorities on Health Over Privacy and Trust in Providers helped overcome it. CONCLUSIONS: A substantial proportion of patients expressed reluctance to share personal values. Fostering trust, addressing emotional and privacy-related concerns, and exploring the diversity in patients' decision-making preferences and personality traits may promote truly patient-centered decision-making.