End-stage liver disease (ESLD) is a life-limiting illness that leads inevitably to physical and psychological suffering and death except in the case of liver transplantation. Unfortunately, of the estimated 400,000 Americans affected by ESLD, most are not liver transplant candidates and fewer than 6,700 are transplanted each year. The population with ESLD will continue to grow with a shift over the next two decades from viral hepatitis related mortality to increasing mortality from fatty liver disease. Although patients dyig from ESLD may have experiences that resemble those of people with other terminal illnesses, much less is known about the symptom burden and archetypical illness trajectory of ESLD. What is known is that patients with ESLD facing death rarely receive appropriate symptom management and palliative care. Thus, the burden of their complex care is left to caregivers who themselves are at risk for reduced quality of life (QOL) and increased mortality. Such known consequences for caregivers may be intensified in ESLD due to aspects specific to liver disease (e.g., substance abuse, often associated with family conflict). Unfortunately, very little s known about how physical and psychological symptom burden changes over time in patients with ESLD and their caregivers, and about the impact of these changes on their QOL. There is a critical need to identify subgroups of patients and caregivers who would benefit most from early palliative care interventions specifically tailored to ESLD. The long-term goal of this program of research is to design such interventions to minimize symptom burden and improve QOL for patient-caregiver dyads as patients with ESLD approach the end of life. The goals of the proposed study are to 1) identify patient and caregiver subgroups that have distinct trajectories of change in symptoms, and quantify the association of these trajectories with patient and caregiver outcomes; and 2) identify different types of patient-caregiver dyads who may need early palliative care intervention. The proposed dyadic study uses a longitudinal prospective descriptive design and has three primary aims:
Aim 1 is to identify trajectories of change in physical and psychological symptom burden in adults with ESLD;
aim 2 is to identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD;
and aim 3 is to determine patterns and predictors of types of patient-caregiver dyads that would benefit from early tailored palliative care interventions. A sample of 240 outpatients with ESLD and 240 caregivers will be enrolled through liver clinics at two hospitals. Data will be collected t five time points over a 12-month period using standardized instruments completed during in-person and telephone interviews. Latent growth mixture modeling and extensions thereof will be used to analyze the three aims. Findings from the study have relevance to the mission of NINR as they will build the scientific foundation to improve symptom management strategies and enhance end of life and palliative care for outpatients with ESLD and their caregivers.

Public Health Relevance

Data from the proposed study are relevant to the health of the hundred thousands of Americans with end-stage liver disease (ESLD) and their caregivers because they will 1) facilitate health care professionals' understanding of patients' and caregivers' physical and psychological symptom burden over time and how they relate to changes in quality of life; 2) provide clinical insight for the management of patients and caregivers based on change in their physical and psychological symptom burden over time; and 3) inform the development of palliative care interventions that can be specifically tailored to different types of ESLD patient- caregiver dyads in need of early palliative care.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1)
Program Officer
Kehl, Karen
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Oregon Health and Science University
Schools of Nursing
United States
Zip Code
Hansen, Lissi; Lyons, Karen S; Dieckmann, Nathan F et al. (2017) Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study. Res Nurs Health 40:398-413