Life after hepatorenal syndrome: unraveling quality of life, psychological distress, and treatment preferences.

Abstract

Background: Hepatorenal syndrome (HRS) is a life-threatening complication of advanced liver disease, associated with high short-term mortality and persistent symptom burden among survivors. While therapeutic advances have improved survival, little is known about the long-term quality of life (QoL), psychological distress, symptom management, and care preferences in this vulnerable population.

Methods: In this prospective mixed-methods study, conducted between September 2024 and March 2025 at Robert Bosch Hospital in Stuttgart, Germany, patients who survived an HRS episode between 2019 and 2024 were identified retrospectively and invited for structured surveys. Patient-reported outcomes were assessed using the Short Form-12 (SF-12), targeted symptom and psychosocial questionnaires, and preference-oriented items. Quantitative data were analyzed descriptively and comparatively; open-ended responses were evaluated using qualitative content analysis.

Results: Fifteen HRS survivors (mean age 62 ± 13 years; 33% male; 73% with alcohol-related cirrhosis) participated. Mean scores on the physical component summary (PCS-12) and mental component summary (MCS-12) of the SF-12 were 42.6 ± 8.5 and 41.7 ± 7.4, respectively, indicating moderate impairment in physical and mental health. Fatigue (73%), fluid retention (53%), and dyspnea (47%) were the most frequently reported symptoms. Psychological distress was reported by 87% of patients, and 53% expressed substantial fear of rehospitalization. Treatment preferences varied: 53% favored intensive care in case of deterioration, 7% preferred a palliative approach, and 40% remained undecided.

Conclusion: Survivors of HRS face considerable long-term impairments and psychosocial vulnerability. These findings underscore the need for structured multidisciplinary follow-up that integrates symptom relief, psychological support, and individualized decision-making. Given the exploratory nature and small sample size, further longitudinal studies are needed to confirm these findings and inform targeted supportive care strategies.