Abstract

Background: Patients with decompensated cirrhosis (DC) often experience high psychological symptom burden. Family caregivers of patients with DC are at risk for psychological distress.

Methods: We conducted a cross-sectional study in which outpatients with DC and their caregivers completed assessments of depression severity (Patient Health Questionnaire 9, (PHQ-9) ≥ 10 indicate moderate-to-severe depression; Hospital Anxiety and Depression Scale (HADS-D)), and anxiety symptoms (Hospital Anxiety and Depression Scale, HADS-A). Scores > 7 on HADS-A and HADS-D indicate clinically significant anxiety and depressive symptoms, respectively. Caregivers also completed the Zarit Burden Index 12 (ZBI-12 ≥ 12 indicate caregiving burden and > 20 indicate high burden). To analyze patient-caregiver dyads, we used paired sample t tests and McNemar’s tests for continuous and categorical variables, respectively.

Results: Between July 2018 and September 2022 we prospectively enrolled 218 out of 330 (66%) patients with DC (mean age 57.5 [SD 10.2], median MELD-Na 16 [IQR 11-22]) and 127 caregivers (mean age 57.1 [SD 13.3], 63% spouses).

Among patients, 42% had moderate-to-severe depression severity based on PHQ-9, and 39% and 44% had clinically significant depressive and anxiety symptoms based on HADS-D and HADS-A, respectively.

Among caregivers, 67% screened positive for caregiving burden and 28% reported high caregiving burden. 24% had moderate-to-severe depression severity, and 35% and 53% had clinically significant depressive and anxiety symptoms, respectively.

Among the 127 patient-caregiver dyads, patients reported significantly higher PHQ-9 (M_diff =3.0, p < 0.001) and HADS-D (M_diff =1.3, p=0.002) scores compared to their caregivers. There was no difference between patients and caregivers on HADS-A (M_diff= -0.7, p=0.16).

Among patient-caregiver dyads, both patients and caregivers reported moderate-to-severe depression and clinically significant depressive and anxiety symptoms in 15%, 18%, and 28% of dyads, respectively.

Conclusion: In this cohort study, patients with DC and their caregivers reported high rates of psychological distress and caregiving burden. Among patient-caregiver dyads, nearly 1 in 6 reported moderate-to-severe depression and over 1 in 4 reported clinically significant anxiety symptoms. These results underscore the critical need to develop supportive care interventions to reduce psychological distress in both patients with DC and their caregivers.