Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers

Background Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients’ and caregivers’ perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. Aim To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. Methods We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently ( κ = 0.95) using template analysis. Results Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. Conclusion Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.