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

Angela Ju, Mark Unruh, Sara Davison, Juan Dapueto, Mary Amanda Dew, Richard Fluck, Michael Germain, Sarbjit V. Jassal, Gregorio Obrador, Donal O'Donoghue, Michelle A. Josephson, Jonathan C. Craig, Andrea Viecelli, Emma O'Lone, Camilla S. Hanson, Braden Manns, Benedicte Sautenet, Martin Howell, Bharathi Reddy, Caroline WilkieClaudia Rutherford, Allison Tong, Adeera Levin, Andrew Narva, Angela Wang, Angelique Ralph, Annette Montalbano Moffat, Barry Bell, Brenda Hemmelgarn, Brigitte Schiller, Carmel Hawley, Christen Perry, Christoph Wanner, Daniel Cukor, Daniel Perez, David Cella, David Harris, David Johnson, David Roer, David Van Wyck, David Wheeler, Deborah Deyhle, Derrick Gill, Dori Schatell, Elena Bavlovlenkov, Eric Weinhandl, Fergus Caskey, Francesca Tentori, Giorgos Sakkas, Harvey Saver, Harvey Wells, James Wadee, Jamilah Akbar, Jane Carter, Jennifer Flythe, Jenny Shen, John Kusek, John Gill, Joyce Beverly, Jule Pinter, Kirsten Johansen, Klemens Meyer, Leonard Lirtzman, Linda Wagner-Weiner, Luigi Costabile, Manisha Jhamb, Marcello Tonelli, Marinella Ruospo, Martin Howell, Maurizio Bossola, Michael Thomas, Nadia Mendez, Neil Powe, Nieltje Gedney, Noah Rouse, Pamela Kaden, Peter Kerr, Peter Tugwell, Quinetta Taylor, Rachel Sand, Roberto Pecoits-Filho, Sally Crowe, Sarah Gill, Sheila Jowsey-Gregoire, Stephen Fadem, Stephen McDonald, Steven Weisbord, Suetonia Palmer, S. Susan Hedayati, Tess Harris, Thomas F. Hiemstra, Uthma Muhammed, Vanessa McNorton, Vanja Sikirica, Vivek Jha, William Herrington, Wim Van Biesen, Wolfgang Winkelmayer, Zeeshan Butt

Research output: Contribution to journalArticlepeer-review

30 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
Pages (from-to)104-112
Number of pages9
JournalAmerican Journal of Kidney Diseases
Volume72
Issue number1
DOIs
Publication statusPublished - 1 Jul 2018
Externally publishedYes
EventSONG-HD Fatigue Consensus workshop - Chicago, Chicago, United States
Duration: 19 Nov 201619 Nov 2016
https://songinitiative.org/projects/song-hd/song-hd-fatigue/

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

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