Prognostic communication, psychological distress, and caregiving burden among caregivers of patients with decompensated cirrhosis

Abstract

Caregivers play a critical role in supporting patients with decompensated cirrhosis (DC) while often also enduring psychological distress themselves. Despite caregivers' essential role in medical decision-making, no studies have examined the associations of caregiver-hepatologist prognostic communication with caregivers' psychological outcomes. In this cross-sectional study, we examined associations of caregivers' self-reported frequency, adequacy, and quality of prognostic communication from the patients' hepatologist (Prognosis and Treatment Preferences Questionnaire) with their anxiety and depression symptoms (Hospital Anxiety and Depression Scale, HADS) and caregiving burden (Zarit Burden Index-12, ZBI-12) using linear regression adjusted for caregiver age, gender, and relationship to the patient. Between August 2018 and September 2022, we enrolled 127/162 (78%) adult caregivers of patients with DC (median age 59 years old, 62% female, 63% spouses). In total, 52% and 35% of caregivers reported clinically significant anxiety and depression symptoms respectively (HADS subscale ≥8), and 27% reported high caregiving burden (ZBI-12 >20). Over 85% had never participated in prognostic communication with their hepatologists about patients' end-of-life care preferences. Higher frequency of prognostic communication with the patient's hepatologist was associated with lower caregiving burden (β=-4.82, p =0.01). Receipt of adequate information about the patient's prognosis was associated with lower caregiving burden (β=-4.21, p =0.02). Lastly, rating the prognostic communication from the patient's hepatologist as high-quality was associated with lower caregiver anxiety symptoms (β=-2.31, p =0.03). Frequency and adequacy of prognostic communication were not significantly associated with caregivers' anxiety and depression symptoms. Quality of prognostic communication was not significantly associated with caregiving burden or depression symptoms. These findings emphasize the substantial psychological distress and burden experienced by caregivers of patients with DC and highlight prognostic understanding as a potential modifiable target for improving their psychological outcomes.

Keywords: advance care planning; liver disease; palliative hepatology; prognostication; serious illness communication.