Patient, caregiver, and oncologist predictions of quality of life in advanced cancer: Accuracy and associations with end-of-life care and caregiver bereavement

Abstract

Background: Informed treatment decision-making necessitates accurate prognostication, including predictions about quality of life.

Aims: We examined whether oncologists, patients with advanced cancer, and caregivers accurately predict patients' future quality of life and whether these predictions are prospectively associated with end-of-life care and bereavement.

Materials & methods: We conducted secondary analyses of clinical trial data. Patients with advanced cancer (n = 156), caregivers (n = 156), and oncologists (n = 38) predicted patient quality of life 3 months into the future. Patients subsequently rated their quality of life 3 months later. Medical record data documented chemotherapy and emergency department (ED)/inpatient visits in the 30 days before death (n = 79 decedents). Caregivers self-reported on depression, anxiety, grief, purpose, and regret 7-months post-mortem. In mixed-effects models, patient, caregiver, and oncologist quality-of-life predictions at study entry were used to predict end-of-life care and caregiver outcomes, controlling for patients' quality of life at 3-month follow-up, demographic and clinical characteristics, and nesting within oncologists.

Results: Caregivers (P < 0.0001) and oncologists (P = 0.001) predicted lower quality of life than what patients actually experienced. Among decedents, 24.0% received chemotherapy and 54.5% had an ED/inpatient visit. When caregivers' predictions were more negative, patients were less likely to receive chemotherapy (P = 0.028) or have an ED/inpatient visit (P = 0.033), and caregivers reported worse depression (P = 0.002), anxiety (P = 0.019), and grief (P = 0.028) and less purpose in life (P < 0.001) 7-months post-mortem.

Conclusion: When caregivers have more negative expectations about patients' quality of life, patients receive less intensive end-of-life care, and caregivers report worse bereavement outcomes.

Keywords: affective forecasting; cancer; caregivers; end-of-life; oncology; prognostication; psycho-oncology.