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

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 palliative care for liver diseases (PAL-LIVER) cluster randomized trial, which compared 2 models of palliative care for ESLD and/or hepatocellular carcinoma at 19 US sites. Patients who coenrolled with a caregiver were compared with those who enrolled alone. Caregivers completed the Zarit Burden Interview-12 and were classified as having a low or high burden (<12 or ≥12, respectively). Patients completed functional assessment of cancer therapy-hepatobiliary (FACT-Hep) (quality of life), Patient Health Questionnaire-9 (PHQ-9) (depression), and modified Edmonton Symptom Assessment Scale (ESAS-13) (symptoms) at baseline and at 3 months.

Of 935 patients enrolled, 559 coenrolled with a caregiver. Notably, 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, Model for End-Stage Liver Disease, 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 coenrollment. ESAS-13 had greater improvement in dyads with high caregiver burden.

In the PAL-LIVER trial, caregiver coenrollment was not associated with PROMs. High caregiver burden was associated with baseline PROMs, but did not affect PROMs at 3 months. Interventions targeted at relieving caregiver burden are urgently needed to improve both patient and caregiver outcomes.