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

Ju, Angela; Unruh, Mark; Davison, Sara; Dapueto , Juan; Dew, Mary Amanda; Fluck, Richard; Germain, Michael; Jassal, Sarbjit V.; Obrador, Gregorio; O’Donoghue, Donal; Josephson, Michelle A.; Craig, Jonathan C.; Viecelli, Andrea K.; O’Lone, Emma; Hanson, Camilla S.; Manns, Braden; Sautenet, Benedicte; Howell, Martin; Reddy, Bharathi; Wilkie, Caroline

doi:10.1053/j.ajkd.2017.12.018

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

Journal

American Journal of Kidney Diseases

ISSN

0272-6386

Date Issued

2018

Author(s)

Ju, Angela

Unruh, Mark

Davison, Sara

Dapueto , Juan

Dew, Mary Amanda

Fluck, Richard

Germain, Michael

Jassal, Sarbjit V.

Obrador, Gregorio

Facultad de Ciencias de la Salud - CampCM

O’Donoghue, Donal

Josephson, Michelle A.

Craig, Jonathan C.

Viecelli, Andrea K.

O’Lone, Emma

Hanson, Camilla S.

Manns, Braden

Sautenet, Benedicte

Howell, Martin

Reddy, Bharathi

Wilkie, Caroline

Rutherford, Claudia

Tong, Allison

Levin, Adeera

Type

text::journal::journal article

DOI

10.1053/j.ajkd.2017.12.018

URL

https://scripta.up.edu.mx/handle/20.500.12552/2249

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. © 2018 by the National Kidney Foundation, Inc.