A JU1,2, M HOWELL1,2, M UNRUH3, SV JASSAL4, G OBRADOR5, S DAVISON6, J DAPUETO7, MA DEW8, R FLUCK9, M GERMAIN10, D O’DONOGHUE11, JI SHEN12, E O’LONE1,2, JC CRAIG1,2, A TONG1,2 FOR THE SONG-HD INITIATIVE
1Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; 3Division of Nephrology, University of New Mexico School of Medicine, Albuquerque, NM, USA; 4Division of Nephrology, Department of Medicine, University Health Network, University of Toronto, Toronto, Ontario, Canada; 5Universidad Panamericana School of Medicine, Mexico City, Mexico; 6Division of Nephrology and Immunology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada; 7Departamento de Psicología Médica. Hospital de Clínicas. Facultad de Medicina. Universidad de la República. Montevideo, Uruguay; 8Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA; 9Department of Renal Medicine, Royal Derby Hospital, Derby, United Kingdom; 10Renal and Transplant Associates of New England, Division of Nephrology, Baystate Medical Center, Tufts University School of Medicine, Boston, MA, USA; 11Department of Renal Medicine, Salford Royal Hospital, Salford, United Kingdom; 12Departmment of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
Aim: To identify the most critical dimensions for inclusion in a core outcome measure of fatigue in haemodialysis trials.
Background: Measures of fatigue used for research in patients on haemodialysis have differing dimensions, length, and scales. The extent to which of the dimensions of fatigue are valued by patients and health professionals are unknown.
Methods: An online survey was conducted among patients/caregivers and health professionals in English and Spanish. The survey consisted of 11 content dimensions of fatigue such as ‘life participation’ and ‘muscle weakness’, and 4 modes of assessment such as ‘severity’ and ‘frequency’, identified in existing measures. A 9-point Likert scale was used to assess absolute importance and relative importance obtained from a best-worst scale (BWS) task.
Results: In total, 342 (60%) health professionals and 227 (40%) patients/caregivers from 60 countries participated in the two surveys. Among all participants, the top rated dimension was ‘life participation’ (impact of fatigue on life participation) with a mean Likert score of 7.55 (95%CI: 7.42-7.68) for the English survey and 5.50 (95% CI: 4.90-6.10) for the Spanish survey. Severity was more important than frequency, duration or change in fatigue in both the English (7.20: 7.06-7.34) and Spanish survey (5.13: 4.52-5.74). English-speaking patients placed highest relative importance on ‘life participation’ (BWS score 9.0:7.8-10.4), compared with Spanish-speaking patients for whom ‘post-dialysis fatigue’ was most important (9.0:7.0-11.0).
Conclusions: Impact of fatigue on life participation was identified as a critical dimension of fatigue, and severity the most important metric. Differences in relative importance of fatigue dimensions suggest cultural differences in priorities. The core outcome measure for fatigue should include severity of impact upon life participation with consideration of cultural validity.