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

Abstract

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. 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. 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. 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.