Fatigue is one of the most prevalent and debilitating symptoms experienced by patients on haemodialysis. Currently, fatigue is measured using a range of instruments including fatigue-specific and subscales of generic quality of life measures. These instruments vary widely in terms of content assessed, usability, psychometric robustness and population for which it was developed. Accurate, rigorous, and consistent assessment of fatigue is required to inform the development and evaluation of interventions for fatigue in haemodialysis, particularly in the context of trials.
The aim of SONG-HD Fatigue is to develop a core outcome measure (i.e. short survey) for fatigue that is validated and feasible for use in all clinical trials involving patients on haemodialysis.
Mark Unruh (Chair) | University of New Mexico, United States
Caroline Wilkie |National Kidney Foundation, United States
Donal O’Donoghue | Salford Royal NHS Foundation Trust, United Kingdom
Gregorio Obrador | Universidad Panamericana, Campus México, Mexico
Juan Dapueto | Univesridad de la Republica, Uruguay
Mary Amanda Dew | University of Pittsburgh, United States
Michael Germain | Baystate Medical Center, United States
Richard Fluck | Derby Hospitals NHS Foundation Trust, United Kingdom
Sara Davison | University of Alberta, Canada
Vanita Jassal | University of Toronto, Canada
Project coordinator: Angela Ju | The University of Sydney, Australia
1. Review of outcome measures (surveys) for fatigue
A comprehensive review is now underway to identify, describe and evaluate all outcome measures that have been used for fatigue in clinical trials involving patients on haemodialysis.
An international online survey has been launched to identify what dimension (or aspects) of fatigue are most important to patients, caregivers and health professional. This survey is open and available in English and Spanish. Click here to register and receive a link to the survey.
3. SONG-HD Fatigue Consensus workshop
The SONG-Fatigue workshop brought together 59 patients, family members, and health professionals to discuss core outcome measures for fatigue. The attendees discussed preliminary results from the review and survey, and gave very interesting and important insights about how to measure fatigue in trials conducted in patients on haemodialysis. The workshop was held on Saturday 19th November 2016 during the American Society of Nephrology Kidney Week in Chicago, United States. This has been published in the American Journal of Kidney Diseases.
Attendees* and contributors: Mark Unruh (Chair)*, Donal O’Donoghue*, Juan Dapueto, Gregorio Obrador*, Mary Amanda Dew, Michael Germain*, Sara Davison, Richard Fluck, Vanita Jassal*, Angela Ju*, Jonathan Craig, Brenda Hemmelgarn, Braden Manns*, David Wheeler, John Gill, Peter Tugwell, Sally Crowe, Tess Harris*, Wim Van Biesen, Wolfgang Winkelmayer, Allison Tong*, Andrea Viecelli*, Camilla Hanson*, Emma O’Lone*, Jenny Shen*, Benedicte Sautenet*, Bharathi Reddy*, Stuart Sprague, Michelle Josephson, Adeera Levin, Aliza Thompson, Angela Wang, Andrew Narva*, Angelique Ralph, Brigitte Schiller, Carmel Hawley*, Christen Perry*, Christoph Wanner*, Daniel Cukor*, David Cella, David Harris, David Johnson*, David Roer*, David Van Wyck*, Deborah Deyhle*, Dori Schatell*, Elena Bavlovlenkov, Eric Weinhandl*, Fergus Caskey, Francesca Tentori, Giorgos Sakkas*, James Wadee*, Jennifer Flythe*, John Kusek*, Jule Pinter*, Kirsten Johansen*, Klemens Meyer*, Manisha Jhamb*, Marcello Tonelli, Marinella Ruospo*, Martin Howell, Maurizio Bossola, Neil Powe*, Peter Kerr, Rachel Sand*, Sharrilyn Evered, Sheila Jowsey-Gregoire, Stephen Fadem*, Stephen McDonald*, Steven Weisbord, Suetonia Palmer*, Susan Hedayati, Thomas Hiemstra, Vanja Sikirica*, Vivek Jha, William Herrington*, Zeeshan Butt*, Annette Montalbano Moffat*, Barry Bell*, Daniel Perez*, Derrick Gill*, Harvey Saver, Harvey Wells, Jamilah Akbar*, Jane Carter*, Joyce Beverly*, Leonard Lirtzman*, Linda Wagner-Weiner*, Luigi Costabile*, Michael Thomas, Nadia Mendez*, Nieltje Gedney, Noah Rouse Jr*, Pamela Kaden*, Quinetta Taylor, Sarah Gill*, Uthma Muhammed*, Vanessa McNorton*
Pilot and validation
We have completed the pilot of the SONG-HD Fatigue Measure. The international validation study will be completed by June 2019.