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
{"title":"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。","authors":"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","doi":"10.1016/j.cgh.2024.10.017","DOIUrl":null,"url":null,"abstract":"<p><strong>Background & aims: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":10347,"journal":{"name":"Clinical Gastroenterology and Hepatology","volume":" ","pages":""},"PeriodicalIF":11.6000,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients with Decompensated Cirrhosis.\",\"authors\":\"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\",\"doi\":\"10.1016/j.cgh.2024.10.017\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background & aims: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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).</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":10347,\"journal\":{\"name\":\"Clinical Gastroenterology and Hepatology\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":11.6000,\"publicationDate\":\"2024-11-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Clinical Gastroenterology and Hepatology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1016/j.cgh.2024.10.017\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"GASTROENTEROLOGY & HEPATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Clinical Gastroenterology and Hepatology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.cgh.2024.10.017","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GASTROENTEROLOGY & HEPATOLOGY","Score":null,"Total":0}
Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients with Decompensated Cirrhosis.
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.
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.
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