Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis

A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report

SONG-HD Fatigue Workshop Collaborators

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient's ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.

Original languageEnglish (US)
Pages (from-to)104-112
Number of pages9
JournalAmerican Journal of Kidney Diseases
Volume72
Issue number1
DOIs
StatePublished - Jul 1 2018

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Consensus Development Conferences
Fatigue
Renal Dialysis
Outcome Assessment (Health Care)
Decision Making
Aptitude
Administrative Personnel
Caregivers
Patient Care
Industry
Research Personnel

Keywords

  • Clinical trials
  • consensus
  • core outcome
  • dialysis symptoms
  • end-stage renal disease (ESRD)
  • fatigue
  • hemodialysis
  • kidney disease
  • life participation
  • nephrology research
  • outcome
  • outcome measure
  • patient-centered research
  • patient-reported outcome (PRO)
  • quality of life
  • tiredness

ASJC Scopus subject areas

  • Nephrology

Cite this

@article{b30594fc41454f9d8f38d38abad14e12,
title = "Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report",
abstract = "Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient's ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.",
keywords = "Clinical trials, consensus, core outcome, dialysis symptoms, end-stage renal disease (ESRD), fatigue, hemodialysis, kidney disease, life participation, nephrology research, outcome, outcome measure, patient-centered research, patient-reported outcome (PRO), quality of life, tiredness",
author = "{SONG-HD Fatigue Workshop Collaborators} and Angela Ju and Mark Unruh and Sara Davison and Juan Dapueto and Dew, {Mary Amanda} and Richard Fluck and Michael Germain and Jassal, {Sarbjit V.} and Gregorio Obrador and Donal O'Donoghue and Josephson, {Michelle A.} and Craig, {Jonathan C.} and Andrea Viecelli and Emma O'Lone and Hanson, {Camilla S.} and Braden Manns and Benedicte Sautenet and Martin Howell and Bharathi Reddy and Caroline Wilkie and Claudia Rutherford and Allison Tong and Adeera Levin and Andrew Narva and Angela Wang and Angelique Ralph and Moffat, {Annette Montalbano} and Barry Bell and Brenda Hemmelgarn and Brigitte Schiller and Carmel Hawley and Christen Perry and Christoph Wanner and Daniel Cukor and Daniel Perez and David Cella and David Harris and David Johnson and David Roer and {Van Wyck}, David and David Wheeler and Deborah Deyhle and Derrick Gill and Dori Schatell and Elena Bavlovlenkov and Eric Weinhandl and Fergus Caskey and Francesca Tentori and Giorgos Sakkas and Zeeshan Butt",
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language = "English (US)",
volume = "72",
pages = "104--112",
journal = "American Journal of Kidney Diseases",
issn = "0272-6386",
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}

Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis : A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report. / SONG-HD Fatigue Workshop Collaborators.

In: American Journal of Kidney Diseases, Vol. 72, No. 1, 01.07.2018, p. 104-112.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis

T2 - A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report

AU - SONG-HD Fatigue Workshop Collaborators

AU - Ju, Angela

AU - Unruh, Mark

AU - Davison, Sara

AU - Dapueto, Juan

AU - Dew, Mary Amanda

AU - Fluck, Richard

AU - Germain, Michael

AU - Jassal, Sarbjit V.

AU - Obrador, Gregorio

AU - O'Donoghue, Donal

AU - Josephson, Michelle A.

AU - Craig, Jonathan C.

AU - Viecelli, Andrea

AU - O'Lone, Emma

AU - Hanson, Camilla S.

AU - Manns, Braden

AU - Sautenet, Benedicte

AU - Howell, Martin

AU - Reddy, Bharathi

AU - Wilkie, Caroline

AU - Rutherford, Claudia

AU - Tong, Allison

AU - Levin, Adeera

AU - Narva, Andrew

AU - Wang, Angela

AU - Ralph, Angelique

AU - Moffat, Annette Montalbano

AU - Bell, Barry

AU - Hemmelgarn, Brenda

AU - Schiller, Brigitte

AU - Hawley, Carmel

AU - Perry, Christen

AU - Wanner, Christoph

AU - Cukor, Daniel

AU - Perez, Daniel

AU - Cella, David

AU - Harris, David

AU - Johnson, David

AU - Roer, David

AU - Van Wyck, David

AU - Wheeler, David

AU - Deyhle, Deborah

AU - Gill, Derrick

AU - Schatell, Dori

AU - Bavlovlenkov, Elena

AU - Weinhandl, Eric

AU - Caskey, Fergus

AU - Tentori, Francesca

AU - Sakkas, Giorgos

AU - Butt, Zeeshan

PY - 2018/7/1

Y1 - 2018/7/1

N2 - Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient's ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.

AB - Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient's ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.

KW - Clinical trials

KW - consensus

KW - core outcome

KW - dialysis symptoms

KW - end-stage renal disease (ESRD)

KW - fatigue

KW - hemodialysis

KW - kidney disease

KW - life participation

KW - nephrology research

KW - outcome

KW - outcome measure

KW - patient-centered research

KW - patient-reported outcome (PRO)

KW - quality of life

KW - tiredness

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U2 - 10.1053/j.ajkd.2017.12.018

DO - 10.1053/j.ajkd.2017.12.018

M3 - Article

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SP - 104

EP - 112

JO - American Journal of Kidney Diseases

JF - American Journal of Kidney Diseases

SN - 0272-6386

IS - 1

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