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, O’Lone, Emma, Hanson, Camilla S., Manns, Braden, Sautenet, Benedicte, Howell, Martin, Reddy, Bharathi, Wilkie, Caroline, Rutherford, Claudia, Tong, Allison, Levin, Adeera, Wang, Angela, Ralph, Angelique, Moffat, Annette Montalbano, Bell, Barry, Hemmelgarn, Brenda, Schiller, Brigitte, Hawley, Carmel, Perry, Christen, Wanner, Christoph, Cukor, Daniel, Perez, Daniel, Cella, David, Harris, David, Johnson, David, Roer, David, Van Wyck, David, Wheeler, David, Deyhle, Deborah, Gill, Derrick, Schatell, Dori, Bavlovlenkov, Elena, Weinhandl, Eric, Caskey, Fergus, Tentori, Francesca, Sakkas, Giorgos, Saver, Harvey, Wells, Harvey, Wadee, James, Akbar, Jamilah, Carter, Jane, Flythe, Jennifer, Shen, Jenny, Kusek, John, Gill, John, Beverly, Joyce, Pinter, Jule, Johansen, Kirsten, Meyer, Klemens, Lirtzman, Leonard, Wagner-Weiner, Linda, Costabile, Luigi, Jhamb, Manisha, Tonelli, Marcello, Ruospo, Marinella, Howell, Martin, Bossola, Maurizio, Thomas, Michael, Mendez, Nadia, Powe, Neil, Gedney, Nieltje, Rouse, Noah, Kaden, Pamela, Kerr, Peter, Tugwell, Peter, Taylor, Quinetta, Sand, Rachel, Pecoits-Filho, Roberto, Crowe, Sally, Gill, Sarah, Jowsey-Gregoire, Sheila, Fadem, Stephen, McDonald, Stephen, Weisbord, Steven, Palmer, Suetonia, Hedayati, S. Susan, Harris, Tess, Hiemstra, Thomas F., Muhammed, Uthma, McNorton, Vanessa, Sikirica, Vanja, Jha, Vivek, Herrington, William, Van Biesen, Wim, Winkelmayer, Wolfgang and Butt, Zeeshan (2018) Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report. American Journal of Kidney Diseases, 72 (1). pp. 104-112. ISSN 02726386

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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.

Item Type: Article
Additional Information: Article available from the publisher's site, link provided.
Keywords: Clinical trials, consensus, hemodialysis, fatigue, outcome, outcome measure, core outcome, patient-reported outcome (PRO), life participation, quality of life, nephrology research, end-stage renal disease (ESRD), patient-centered research, kidney disease,
Divisions: Health Sciences
Depositing User: Ms Alice Primmer
Date Deposited: 03 May 2018 15:22
Last Modified: 22 May 2019 11:45
URI: http://marjon.repository.guildhe.ac.uk/id/eprint/17224
Related URLs: http://www.ajkd ... 0118-5/fulltext (Publisher URL)

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