Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study

To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU.

We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics.

At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU.

We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.