Abstract

Understanding patients' preferred roles in medical decision making (i.e., passive, collaborative, active) is important to personalized care and patient engagement. Patient control preferences have been described for many treatment decisions, but their stability over time has not been characterized, particularly for major medical events with long-term implications. We prospectively surveyed 233 patients at the initiation of evaluation for a left ventricular assist device, and 1 and 6 months later, including collection of the Control Preferences Scale. Collaborative and active preferences were most common initially, followed by a shift towards more active. Approximately half of patients reported a different control preference in follow up. Patients with higher income and education levels were more likely to prefer an active role. These findings suggest that most patients want to be engaged in shared decision making, but to what degree is varied, can change over time, and is influenced by social determinants of health.

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