Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients with Decompensated Cirrhosis.

IF 11.6 1区医学 Q1 GASTROENTEROLOGY & HEPATOLOGY Clinical Gastroenterology and Hepatology Pub Date : 2024-11-19 DOI:10.1016/j.cgh.2024.10.017

John Donlan, Alyson Kaplan, Alan Noll, Kedie Pintro, Nora Horick, Chengbo Zeng, Maria Edelen, Zainab Soetan, Cameron Comrie, Teresa Indriolo, Lucinda Li, Enya Zhu, Malia E Armstrong, Leah L Thompson, Joyce Zhou, Michelle S Diop, Nancy Mason, Kirsten G Engel, Michaela Rowland, Sara Kenimer, Karen O'Brien, Jennifer C Lai, Vicki Jackson, Raymond T Chung, Areej El-Jawahri, Nneka N Ufere

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Abstract

Background & aims: Timely prognostic communication is a critical component of care for patients with decompensated cirrhosis (DC). However, few studies have examined the association of prognostic communication with symptoms, mood, and health-related quality of life (HRQOL) in this population.

Methods: In this cross-sectional study of 218 outpatients with DC, we assessed their self-reported health status (terminally ill vs. not terminally ill), their prognostic communication with their hepatologists (Prognosis and Treatment Preferences Questionnaire), symptom burden (Revised Edmonton Symptom Assessment Scale), psychological distress (Hospital Anxiety and Depression Scale), and HRQOL (Short-Form Liver Disease Quality of Life scale). We used linear regression to examine associations among patients' self-reported health status and prognostic communication, symptom burden, psychological distress, and HRQOL.

Results: Over 75% of patients reported that prognostic communication was helpful for making treatment decisions, maintaining hope, and coping with their disease. However, 81% had never discussed their end-of-life care wishes with their hepatologists. Overall, 36% self-reported a terminally ill health status which was associated with higher symptom burden (B=8.33, p=0.003), anxiety (B=1.97, p=0.001), and depression (B=2.01, p=0.001) and lower HRQOL (B=-7.22, p=0.002). Patients who wished they had more information on their prognosis reported higher symptom burden (B=7.14, p=0.010), anxiety (B=1.63, p=0.005), and depression (B=1.50, p=0.010) and lower HRQOL (B=-7.65, p=0.001).

Conclusions: While most patients with DC highly valued prognostic communication, the majority reported never discussing their end-of-life care preferences with their hepatologists. Self-reported terminally ill health status and inadequate prognostic communication were associated with poorer symptoms, mood, and HRQOL. Interventions to improve prognostic communication while simultaneously providing adequate supportive care are warranted.

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失代偿期肝硬化患者的预后沟通、症状负担、心理压力和生活质量。

背景和目的：及时进行预后沟通是失代偿期肝硬化（DC）患者护理的重要组成部分。然而，很少有研究探讨预后沟通与这一人群的症状、情绪和健康相关生活质量（HRQOL）之间的关系：在这项针对 218 名肝硬化门诊患者的横断面研究中，我们评估了他们自我报告的健康状况（病入膏肓与非病入膏肓）、他们与肝病医生的预后沟通（预后和治疗偏好问卷）、症状负担（修订版埃德蒙顿症状评估量表）、心理困扰（医院焦虑和抑郁量表）以及 HRQOL（短式肝病生活质量量表）。我们使用线性回归法研究了患者自我报告的健康状况与预后沟通、症状负担、心理困扰和 HRQOL 之间的关联：结果：超过 75% 的患者表示，预后沟通有助于他们做出治疗决定、保持希望和应对疾病。然而，81%的患者从未与他们的肝病专家讨论过他们的临终关怀愿望。总体而言，36% 的患者自述健康状况处于临终状态，这与较高的症状负担（B=8.33，p=0.003）、焦虑（B=1.97，p=0.001）和抑郁（B=2.01，p=0.001）以及较低的 HRQOL（B=-7.22，p=0.002）有关。希望获得更多预后信息的患者报告了较高的症状负担（B=7.14，P=0.010）、焦虑（B=1.63，P=0.005）和抑郁（B=1.50，P=0.010）以及较低的 HRQOL（B=-7.65，P=0.001）：虽然大多数 DC 患者高度重视预后沟通，但大多数患者表示从未与肝病专家讨论过他们的临终关怀偏好。自我报告的临终健康状况和预后沟通不足与较差的症状、情绪和 HRQOL 有关。在提供充分支持性护理的同时，有必要采取干预措施来改善预后沟通。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Clinical Gastroenterology and Hepatology 医学-胃肠肝病学

CiteScore

16.90

自引率

4.80%

发文量

903

审稿时长

22 days

期刊介绍： Clinical Gastroenterology and Hepatology (CGH) is dedicated to offering readers a comprehensive exploration of themes in clinical gastroenterology and hepatology. Encompassing diagnostic, endoscopic, interventional, and therapeutic advances, the journal covers areas such as cancer, inflammatory diseases, functional gastrointestinal disorders, nutrition, absorption, and secretion. As a peer-reviewed publication, CGH features original articles and scholarly reviews, ensuring immediate relevance to the practice of gastroenterology and hepatology. Beyond peer-reviewed content, the journal includes invited key reviews and articles on endoscopy/practice-based technology, health-care policy, and practice management. Multimedia elements, including images, video abstracts, and podcasts, enhance the reader's experience. CGH remains actively engaged with its audience through updates and commentary shared via platforms such as Facebook and Twitter.