Abstract
PURPOSE: To explore preferred and experienced roles and their congruence among Chinese cancer patients in decision making with their doctors and families. METHODS: We used the adapted Control Preferences Scale to identify preferred and experienced roles of patients in decision-making. Multivariate logistic regression analysis was performed to evaluate the effects of cancer types and family involvement on patients' decision-making roles with doctors. RESULTS: A total of 1264 respondents were included. The percentage of respondents preferring patient-led, shared or doctor-led roles in decision-making with doctors was 44.0%, 39.8%, and 16.2%, respectively. The percentage of respondents experiencing patient-led, shared or doctor-led roles in decision-making with doctors was 56.7%, 32.5%, and 10.8%, respectively. The concordance between preference and experience was moderate (κ = 0.41). Most of respondents preferred (77.14%) and experienced (70.89%) shared decision making with their families. Breast cancer patients preferred and experienced passive roles (P < 0.01), and uterine cancer patients reported that their experience was less active than their preference (P < 0.01). CONCLUSION: Most Chinese cancer patients actively or collaboratively participated in decision-making with their doctors. Additionally, the majority of patients preferred and experienced shared decision-making with their families. Patients with uterine cancer indicated an unsatisfied desire to participate in decision-making, while those with breast cancer tended to be more passive.