Caregiver Involvement and Burden and Patient Quality of Life in Patients with Decompensated Cirrhosis

BACKGROUND: Informal caregivers are critical for the care of patients with end stage liver disease (ESLD), but few studies have examined their impact on patient-reported outcome measures (PROMs). We aimed to describe the association between caregiver involvement, caregiver burden, and PROMs in a large ESLD cohort. METHODS: We analyzed the PAL-LIVER cluster randomized trial, which compared two models of palliative care for ESLD and/or hepatocellular carcinoma at 19 US sites. Patients who co-enrolled with a caregiver were compared to those who enrolled alone. Caregivers completed the Zarit Burden Interview-12 (ZBI-12) and were classified as having a low or high burden (<12 or ≥12, respectively). Patients completed FACT-Hep (quality of life), PHQ-9 (depression), and modified ESAS-13 (symptoms) at baseline and at 3 months. RESULTS: Of 935 patients enrolled, 559 co-enrolled with a caregiver. 32% of caregivers had a high burden. FACT-Hep, PHQ-9, and ESAS-13 were similar in those with and without a caregiver. High caregiver burden was associated with worse FACT-Hep, PHQ-9, and ESAS-13. Adjusting for patient sex, MELD, and liver diagnosis, high caregiver burden was associated with 11-point lower FACT-Hep, 3-point higher PHQ-9, and 13-point higher ESAS-13. After 3 months, all PROMs improved, but improvements did not differ by co-enrollment. ESAS-13 had greater improvement in dyads with high caregiver burden. CONCLUSIONS: In the PAL-LIVER trial, caregiver co-enrollment was not associated with PROMs. High caregiver burden was associated with baseline PROMs, but did not impact PROMs at 3 months. Interventions targeted at relieving caregiver burden are urgently needed to improve both patient and caregiver outcomes.