Abstract: SA-PO780
The Standardised Outcomes in Nephrology-Haemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for Fatigue in Patients on Haemodialysis
Session Information
- Standard Hemodialysis for ESRD - I
November 04, 2017 | Location: Hall H, Morial Convention Center
Abstract Time: 10:00 AM - 10:00 AM
Category: Dialysis
- 601 Standard Hemodialysis for ESRD
Authors
- Ju, Angela, University of Sydney, Sydney, New South Wales, Australia
- Unruh, Mark L., University of New Mexico, Los Ranchos, New Mexico, United States
- Craig, Jonathan C., University of Sydney/Children's Hospital, Sydney, New South Wales, Australia
- Tong, Allison, The University of Sydney, Sydney, New South Wales, Australia
Background
Fatigue is a critically important outcome for patients on haemodialysis but is infrequently and inconsistently reported across trials and observational studies, which probably reflects the lack of suitable measures that are feasible and psychometrically robust to use in this setting.
Methods
At an international consensus workshop, 56 (15 patients/caregivers; 42 health professionals) participated from nine different countries in six facilitated breakout groups. All discussions were transcribed and analysed thematically
Results
Four themes were identified. Drawing attention to a distinct and all-encompassing symptom was explicitly recognising fatigue as a multifaceted symptom that is unique to haemodialysis. Emphasising the pervasive impact of fatigue on life participation confirmed the importance of addressing patient concerns about consequences of fatigue such as being limited in their ability to do usual activities such as work and hobbies, and justified the focus on assessing this restriction. Ensuring meaningfulness of the measure was advocated to facilitate treatment decision-making for both patients and clinicians. Minimising burden of administration meant that the measure should be simple, short, without imposing additional burden given the high level of fatigue in the haemodialysis population. These support a proposed core outcome measure that asks patients about the extent to which fatigue limits participation in usual activities.
Conclusion
Patients, caregivers and health professionals supported the need for a simple, short, and meaningful core outcome measure that focuses on the impact of fatigue on life participation to be used in haemodialysis trials.
Funding
- Government Support - Non-U.S.