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

Abstract

AbstractBackgroundThis study aimed to examine (1) the evolution of patients–caregiver dyad decision‐making role preferences over 3 years and the predictors of these preferences; and (2) discordance in decision‐making role preferences among dyads.MethodsA total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision‐making roles every 3 months. The predictors for decision‐making role preferences among dyads were identified via the actor–partner interdependence framework using a mixed‐effect ordered logistic model.ResultsThe 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).ConclusionDespite 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.