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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
Ju, Angela Unruh, Mark Davison, Sara Dapueto, Juan Dew, Mary Amanda Fluck, Richard Germain, Michael Jassal, Sarbjit V. Obrador, Gregorio O'Donoghue, Donal
Ju, Angela
Unruh, Mark
Davison, Sara
Dapueto, Juan
Dew, Mary Amanda
Fluck, Richard
Germain, Michael
Jassal, Sarbjit V.
Obrador, Gregorio
O'Donoghue, Donal
Author
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
O’Lone, Emma
Hanson, Camilla S.
Manns, Braden
Sautenet, Benedicte
Howell, Martin
Reddy, Bharathi
Wilkie, Caroline
Rutherford, Claudia
Tong, Allison
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
O’Lone, Emma
Hanson, Camilla S.
Manns, Braden
Sautenet, Benedicte
Howell, Martin
Reddy, Bharathi
Wilkie, Caroline
Rutherford, Claudia
Tong, Allison
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
Date
2018
Type
Journal article
Journal
American Journal of Kidney Diseases
Book
Volume
72
Issue
1
Page Range
104-112
Article Number
ACU Department
Collections
Relation URI
Source URL
Event URL
Open Access Status
License
All rights reserved
File Access
Controlled