Ufere Nneka N, Donlan John, Indriolo Teresa, Richter James, Thompson Ryan, Jackson Vicki, Volandes Angelo, Chung Raymond T, Traeger Lara, El-Jawahri Areej
Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA.
Department of Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Dig Dis Sci. 2021 Sep;66(9):2942-2955. doi: 10.1007/s10620-020-06617-4. Epub 2020 Sep 22.
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.
To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs.
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.
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.
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.
终末期肝病（ESLD）患者经常再次入院；然而，缺乏聚焦于患者及其照护者对过渡性照护经历的看法以确定造成繁重照护过渡根本原因的研究。
探讨ESLD患者及其照护者的过渡性照护经历，以确定他们的支持性照护需求。
我们对15名ESLD患者和14名非正式照护者进行了访谈。我们使用半结构化访谈指南来探讨自ESLD诊断以来他们的经历，包括他们的照护过渡情况。两名评分者使用模板分析独立对访谈进行编码（κ = 0.95）。
参与者报告称，在ESLD诊断后从医院过渡到家中时，他们感觉没有准备好应对自己在信息、心理社会和实际照护方面的需求。针对这些照护需求的支持性照护服务未能及时提供，导致患者再次入院、情绪困扰、照护者倦怠、工作能力下降和经济困难。参与者分享了他们认为会改善其照护质量的以下资源：（1）出院清单，（2）在线资源，（3）心理健康支持，（4）照护者支持与培训，以及（5）财务指导。
需要关注照护信息、心理社会和实际领域的过渡性照护模式，以便在诊断时及之后更好地支持ESLD患者及其照护者。如果不关注新诊断的ESLD患者及其照护者的多维度照护需求，他们就有面临繁重照护过渡、高医疗利用率和较差健康相关生活质量的风险。
