Symptom Distress in Patients With End-Stage Liver Disease Toward the End of Life

Hansen, Lissi; Leo, Michael C.; Chang, Michael; Zaman, Atif; Naugler, W.; Schwartz, Jonathan M.

doi:10.1097/sga.0000000000000108

Cited by 27 publications

(48 citation statements)

References 31 publications

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“…The CMSAS subscales have demonstrated reliability (Cronbach's alphas ranged from .79 to .87) and validity with cancer patients (Lam et al, ). In our preliminary study, the Cronbach's alphas at baseline for the global symptom distress index (GDI), the psychological symptom distress (PSYCH), the physical symptom distress (PHYS), and MSAS total score were .83, .94, .87, and .93, respectively (Hansen et al, ).…”

Section: Methodsmentioning

confidence: 98%

“…There are over 2,650 patients diagnosed with cirrhosis at the participating clinics. Of these patients, more than 335 are estimated to have a MELD score of >15 (Chang & Naugler, 2015personal communication, October 12, 2015. Patients with a MELD score of <15 will be excluded because they are likely to be asymptomatic, have no progressive symptoms, or have few disease complications in the study's timeframe.…”

Section: Samplementioning

confidence: 99%

“…Patients awaiting transplantation experience marked worsening of overall health (Lai et al, ), physical symptoms like fatigue, affective symptoms like depression and anxiety (Stewart et al, ), uncertainty (Kimbell, Boyd, Kendall, Iredale, & Murray, ) poor QOL, fear of dying (Bjork & Naden, ; Derck et al, ), and worsening ascites and confusion due to hepatic encephalopathy (Onyekwere, Ogbera, & Hameed, ). Adults with ESLD toward the end of life experience pain (Hansen, Leo, Chang, Zucker, & Sasaki, ), symptom distress (Hansen et al, ), dyspnea, and depression (Poonja et al, ). QOL in ESLD is significantly worse compared to QOL in patients with other advanced conditions such as chronic obstructive pulmonary disease and heart failure (Verma & Navarro, ; Younossi et al, ).…”

Section: Introductionmentioning

confidence: 99%

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Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

Hansen

Lyons

Dieckmann

et al. 2017

Research in Nursing & Health

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Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, “Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads,” which is currently in progress. The study is designed to (1) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (2) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (3) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.

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Section: Methodsmentioning

confidence: 98%

Section: Samplementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

Hansen

Lyons

Dieckmann

et al. 2017

Research in Nursing & Health

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“…Decisional capacity was assessed using the Guidance on Human Subjects Research with Decisionally Impaired Adults (19). This assessment and the data collection procedures have been described in more detail elsewhere (20). …”

Section: Methodsmentioning

confidence: 99%

Pain and Self-Care Behaviours in Adult Patients with End-Stage Liver Disease: A Longitudinal Description

et al. 2014

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This prospective descriptive study investigated pain characteristics in 20 outpatients with end-stage liver disease (ESLD) approaching end of life, described variability in pain between and within patients, and described pharmacological and non-pharmacological pain management strategies used. The instruments utilized were: the Wisconsin Brief Pain Inventory (BPI) and the Self-Care Behavior Log for Pain (SCB). Data were collected once a month over a 6-month period. BPI severity of and interference from pain mean scores ranged from 5.52 to 6.03 and 5.36 to 6.64, respectively. The top three behaviors for relieving pain patients reported were “taking pain medication,” “taking a nap,” and “asking for help.” Pain medication intake differed between patients who were pursuing a liver transplant and those who were not eligible for transplantation. To effectively improve care for ESLD, it is essential to understand the ways in which these patients experience pain and the pain management strategies they employ.

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“…changes, emotional problems, 3,9 weight loss, muscle cramps, and the inability to work. 5 These symptoms are associated with reduced QOL and psychological distress in LC patients and disrupt patients' daily life and activities.…”

mentioning

confidence: 99%

Quality of Life in Patients With Liver Cirrhosis: A Systematic Review

Pazokian

Esmaeili

2019

Hosp Pract Res

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Background: Quality of life (QOL) is a powerful phrase that reflects maintaining health and well-being in different societies and cultures, reflecting the positive and negative aspects of people’s lives. Patients with liver cirrhosis (LC) have an undesirable QOL, and this has become one of the most important causes of mortality in the world. Objective: This review article aimed to summarize the results of previous studies on health-related QOL in patients with LC to determine their problems and needs. Methods: This review was conducted using Cochran’s seven-step model. This paper is the result of research on QOL in patients with LC through searches conducted in Google Scholar, PubMed, and Science Direct using the keywords liver cirrhosis, chronic liver disease, quality of life, health-related quality of life, and self-care for articles published between 2012-2018. Ultimately, 11 articles were obtained and analyzed. Results: The results of this review showed that the QOL in patients with LC is poor and is lower than in other populations. Many factors, such as age, gender, and education, influence QOL and should be addressed in order to solve the challenges and problems faced by these patients. Increasing awareness and education are the most important issues for LC patients. Conclusion: QOL in patients with LC is affected by many factors. The lack of awareness about the disease and its complications is considered the biggest problem for these patients. To improve the QOL and care of these patients, nursing care guidelines, awareness raising, and education about the disease and its complications, treatment, and new treatments are needed.

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Symptom Distress in Patients With End-Stage Liver Disease Toward the End of Life

Cited by 27 publications

References 31 publications

Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

Pain and Self-Care Behaviours in Adult Patients with End-Stage Liver Disease: A Longitudinal Description

Quality of Life in Patients With Liver Cirrhosis: A Systematic Review

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