Association Between Financial Distress with Patient and Caregiver Outcomes in Home-Based Palliative Care: A Secondary Analysis of a Clinical Trial

Background Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this. Objective Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes. Design, Settings, and Participants Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020. Measurements Financial distress at admission to HBPC was measured using a global question (0–10-point scale: none=0; mild=1–5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization. Results Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p <.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: −4.39; 95% CI: −7.61, −1.17; p <.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87–1.40; p =.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p =.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores. Conclusion These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services.