Quality of Life, Symptom Burden, and Prognostic Perceptions Among Patients with Decompensated Cirrhosis

Outcomes 1. Describe the physical and psychological symptom burden of an ambulatory cohort of patients with decompensated cirrhosis.2. Describe the association between self-reported terminally ill health status and quality of life, physical symptom burden, anxiety, and depression in an ambulatory cohort of patients with decompensated cirrhosis. Key Message We examined the associations of self-reported health status (terminally ill vs. not terminally ill) with quality of life (QOL), symptom burden, and psychological distress among 218 outpatients with decompensated cirrhosis. Self-reported terminally ill health status was significantly associated with higher symptom burden and lower QOL and mood. Interventions to improve patients’ prognostic understanding while providing adequate psychosocial support are warranted.Abstract: Introduction/Context: Data describing quality of life (QOL), symptom burden, psychological distress, and prognostic understanding in patients with decompensated cirrhosis (DC) are lacking. Objectives To describe associations among QOL, symptom burden, psychological distress, and prognostic perceptions among outpatients with DC. Methods We conducted a cross-sectional study in which outpatients with DC completed assessments of quality of life (Short-Form Liver Disease Quality of Life scale, SF-LDQOL, range 0-100, higher scores = higher QOL), symptom burden (Edmonton Symptom Assessment Scale, ESAS), depression (Patient Health Questionnaire 9, PHQ-9) and anxiety symptoms (Hospital Anxiety and Depression Scale, HADS-A). Patients completed the Prognostic Treatment Perceptions Questionnaire to assess their self-reported health status. We used linear regression analyses to examine the associations of patients’ self-reported health status (terminally ill vs. not terminally ill) with their QOL, symptom burden, and psychological distress. Results Between 7/2018 and 9/2022 we prospectively enrolled 66% (218/330) of eligible outpatients with DC (mean age 57.5, 50% listed for transplant).Mean SF-LDQOL score was 57.8 (SD 16.4). Patients reported a high frequency of moderate-to-severe tiredness (77%), drowsiness (68%), pain (50%) and muscle cramps (48%). 42% reported moderate-to-severe depression and 44% reported clinically-significant anxiety symptoms.93% indicated that knowing their prognosis was “extremely important” or “important”. However, 81% had never discussed their end-of-life care wishes with their hepatologist. 34% self-reported a terminally ill health status. Patients who reported a terminally ill health status had worse quality of life (SF-LDQOL; B= -7.27, p=0.002), symptom burden (ESAS; B=8.54, p=0.003), anxiety (HADS-A; B=1.89, p=0.002) and depression (PHQ-9; B=2.64, p=0.001). Conclusions Patients with DC struggle with poor QOL and immense symptom burden and psychological distress. Despite patients reporting the importance of knowing their prognosis, self-reported terminally ill health status was associated with lower QOL and mood. Interventions to improve patients’ prognostic understanding while providing adequate psychosocial support are warranted. Keywords Scientific Research /Disease specific management