Association of decision-making with patients' perceptions of care and knowledge during longitudinal pulmonary nodule surveillance

Rationale: Patient participation in medical decision-making is widely advocated, but outcomes are inconsistent. Objectives: We examined the associations between medical decision-making roles, and patients' perceptions of their care and knowledge while undergoing pulmonary nodule surveillance. Methods: The study setting was an academically affiliated Veterans Affairs hospital network in which 121 participants had 319 decision-making encounters. The Control Preferences Scale was used to assess patients' decision-making roles. Associations between decision-making, including role concordance (i.e., agreement between patients' preferred and actual roles), shared decisionmaking (SDM), and perceptions of care and knowledge, were assessed using logistic regression and generalized estimating equations. Results: Participants had a preferred role in 98% of encounters, and most desired an active role (shared or patient controlled). For some encounters (36%), patients did not report their actual decisionmaking role, because they did not know what their role was. Role concordance and SDM occurred in 56% and 26% of encounters, respectively. Role concordance was associated with greater satisfaction with medical care (adjusted odds ratio [Adj-OR], 5.39; 95% confidence interval [CI], 1.68-17.26), higher quality of patientreported care (Adj-OR, 2.86; 95% CI, 1.31-6.27), and more disagreement that care could be better (Adj-OR, 2.16; 95% CI, 1.12-4.16). Role concordance was not associated with improved pulmonary nodule knowledge with respect to lung cancer risk (Adj-OR, 1.12; 95% CI, 0.63-2.00) or nodule information received (Adj-OR, 1.13; 95% CI, 0.31-4.13). SDM was not associated with perceptions of care or knowledge. Conclusions: Among patients undergoing longitudinal nodule surveillance, a majority had a preference for having active roles in decision-making. Interestingly, during some encounters, patients did not know what their role was or that a decision was being made. Role concordance was associated with greater patient-reported satisfaction and quality of medical care, but not with improved knowledge. Patient participation in decision-making may influence perceptions of care; however, clinicians may need to focus on other communication strategies or domains to improve patient knowledge and health outcomes.