A prospective cohort study of decision-making role preferences of patients with advanced cancer and their family caregivers.

Abstract

This study aimed to examine (1) the evolution of patients-caregiver dyad decision-making role preferences over 3years and the predictors of these preferences; and (2) discordance in decision-making role preferences among dyads. A total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision-making roles every 3months. The predictors for decision-making role preferences among dyads were identified via the actor-partner interdependence framework using a mixed-effect ordered logistic model. The proportion of patients and caregivers preferring patient-led decision-making was higher at the end of third year compared to baseline (patients: 40% vs. 20%, p value <.01; caregivers: 33% vs. 21%, p value=.03). Patients with female (odds ratio [OR], 1.74; p value <.01) and older (1-year OR, 1.02; p value <.01) caregivers and younger patients (1-year OR, 0.97; p value <.01) preferred higher involvement in decision-making. Caregivers with tertiary education (vs. lower education) (OR, 1.59; p value= .02) and those who accurately understood patients' treatment goals (OR, 1.37; p value= .01) preferred greater patient involvement in decision-making. Conversely, caregivers of female patients (OR, 0.68; p value= .03) and younger patients (1-year OR, 0.98; p value <.01) preferred lesser patient involvement in decision-making. The proportion of patient-caregiver dyads with discordance in preferred decision-making was lower at the end of the third year (51%) compared to baseline (68%) (p value <.01). Despite a reduction in the proportion of dyads with discordance toward the end-of-life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance.