Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers
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ORIGINAL ARTICLE
Burdensome Transitions of Care for Patients with End‑Stage Liver Disease and Their Caregivers Nneka N. Ufere1 · John Donlan1 · Teresa Indriolo1 · James Richter1 · Ryan Thompson2 · Vicki Jackson3 · Angelo Volandes4 · Raymond T. Chung1 · Lara Traeger5 · Areej El‑Jawahri6 Received: 7 July 2020 / Accepted: 14 September 2020 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract 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. Keywords Cirrhosis · Caregivers · Qualitative research · Supportive care · Transitions of care Abbreviations ESLD End-stage liver disease CHF Congestive heart failure COPD Chronic obstructive pulmonary disease ICU Intensive care unit
Lara Traeger and Areej El-Jawahri have contributed equally to this work. * Nneka N. Ufere [email protected] Extended author information available on the last page of the article
Introduction Cirrhosis is a chronic medical condition that has doubled in prevalence over the past decade [1]. Over time, patients with cirrhosis can develop ascites and hepatic encephalopathy, debilitating liver-related complications that mark the transition to a state known as end-stage liver disease (ESLD) [2]. Due to these complications, patients with ESLD have high rates of healthcare utilization, resulting in
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