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

Lissi Hansen, Karen Lyons, Nathan Dieckmann, Michael F. Chang, Shirin Hiatt, Emma Solanki, Christopher Lee

Research output: Contribution to journalArticle

1 Citation (Scopus)

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 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.

Original languageEnglish (US)
JournalResearch in Nursing and Health
DOIs
StateAccepted/In press - 2017

Fingerprint

End Stage Liver Disease
Caregivers
Palliative Care
Quality of Life
Psychology
Terminal Care
Longitudinal Studies
Fibrosis
Growth
Research

Keywords

  • Caregivers
  • Liver cirrhosis
  • Palliative care
  • Quality of life
  • Research protocol

ASJC Scopus subject areas

  • Nursing(all)

Cite this

Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study. / Hansen, Lissi; Lyons, Karen; Dieckmann, Nathan; Chang, Michael F.; Hiatt, Shirin; Solanki, Emma; Lee, Christopher.

In: Research in Nursing and Health, 2017.

Research output: Contribution to journalArticle

@article{50cefb4d8ce24d738e097c7e9f6ac1c9,
title = "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 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.",
keywords = "Caregivers, Liver cirrhosis, Palliative care, Quality of life, Research protocol",
author = "Lissi Hansen and Karen Lyons and Nathan Dieckmann and Chang, {Michael F.} and Shirin Hiatt and Emma Solanki and Christopher Lee",
year = "2017",
doi = "10.1002/nur.21807",
language = "English (US)",
journal = "Research in Nursing and Health",
issn = "0160-6891",
publisher = "John Wiley and Sons Inc.",

}

TY - JOUR

T1 - Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study

AU - Hansen, Lissi

AU - Lyons, Karen

AU - Dieckmann, Nathan

AU - Chang, Michael F.

AU - Hiatt, Shirin

AU - Solanki, Emma

AU - Lee, Christopher

PY - 2017

Y1 - 2017

N2 - 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 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.

AB - 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 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.

KW - Caregivers

KW - Liver cirrhosis

KW - Palliative care

KW - Quality of life

KW - Research protocol

UR - http://www.scopus.com/inward/record.url?scp=85021627437&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85021627437&partnerID=8YFLogxK

U2 - 10.1002/nur.21807

DO - 10.1002/nur.21807

M3 - Article

JO - Research in Nursing and Health

JF - Research in Nursing and Health

SN - 0160-6891

ER -