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 (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) 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 r...
Source: Research in Nursing and Health - Category: Nursing Authors: Tags: RESEARCH ARTICLE Source Type: research