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

Abstract

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.

Psychosocial Support in Liver Transplantation: A Dyadic Study With Patients and Their Family Caregivers

“…Patients and caregivers waiting for a liver transplantation are highly challenged as a dyad, even more so than other organ recipients. The symptoms of encephalopathy that liver failure entails, and the underlying relationship conflicts that may be present if the pathology is linked to substance abuse, might impose a greater burden on the process of waiting (Meltzer and Rodrigue, 2001; Jim et al, 2014; Hansen et al, 2017). The present study is the first to explore the relationship between patient’s and caregiver’s psychological symptoms, perceived social support, and distribution of dependency.…”

“…From the diagnosis of organ failure to the operation, transplant recipients go through an articulated process, which is known to be psychologically and physically fatiguing both for them (Kimbell et al, 2015) and their informal caregivers (Cohen et al, 2007; Rodrigue et al, 2010, 2011; Goetzinger et al, 2012). Although substance-abuse-related liver disease and associated risky behavior are already linked to long-standing family conflicts and subsequent deterioration in relationships (Mangueira and Lopes, 2016; Hansen et al, 2017; Le et al, 2019), other types of liver disease may also change the patient’s mood and behavior, thus making the patient becomes less lucid and, occasionally, more aggressive (Jim et al, 2014). Lower income level, unemployment, and living with spouse are positively associated with having depression in patients suffering from chronic hepatitis B (Vu et al, 2019a).…”

“…Goetzmann et al (2012) conducted a more in-depth analysis but included patients and spouses that had already undergone organ transplantations without discriminating among different organs. Little is still known about how patients and caregivers influence each other in the organ transplantation waiting experience (Hansen et al, 2017).…”

Coaching as a method for potentially reducing the risk of burnout in medical professionals

“…Attention has been drawn to the specificity of the work performed by the representatives of medical professions. Moreover, the effects of coaching has been presented with regard to informal caregivers as a group which is exposed not merely to a physical but also a mental burden [71][72][73]. What is striking is the lack of publications concerning the application of urse-oriented coaching, the objective of which would be to reduce the risk of burnout.…”

Approaches to Assessing Burden in Caregivers of Patients with Cirrhosis

“…1,2 Approximately 34,000 deaths are reported annually from liver cirrhosis. 3 Liver transplant (LT) has dramatically improved survival and quality of life (QOL) for patients with complicated liver disease. 1,2 Transplant is a life-altering change for the patient and their families.…”