Rachel Urquhart-Secord1, Jonathan C Craig1, Brenda Hemmelgarn2, Helen Tam-Tham2, Braden Manns2, Martin Howell1, Kevan R Polkinghorne3, Peter G Kerr3, David C Harris4, Stephanie Thompson5, Kara Schick-Makaroff6, David C Wheeler7, Wim van Biesen8, Wolfgang C Winkelmayer9, David W Johnson10, Kirsten Howard11, Nicole Evangelidis1, Allison Tong12. 1. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia. 2. Department of Medicine, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Canada; Department of Community Health Sciences; Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Canada. 3. Monash Medical Centre and Monash University, Clayton, Australia; Department of Epidemiology & Preventative Medicine, Monash University, Clayton, Australia. 4. Centre for Transplantation and Renal Research, Westmead Hospital, Sydney, NSW, Australia. 5. Department of Medicine, University of Alberta, Edmonton, Canada. 6. Faculty of Nursing, University of Alberta, Edmonton, Canada. 7. Centre for Nephrology, University College London, London, United Kingdom. 8. Renal Division, Ghent University Hospital, Ghent, Belgium. 9. Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX. 10. Queensland School of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia; Translational Research Institute, Brisbane, Australia; Metro South and Ipswich Nephrology and Transplant Services (MINTS), Brisbane, Australia. 11. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia. 12. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia. Electronic address: allison.tong@sydney.edu.au.
Abstract
BACKGROUND: In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients' priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. STUDY DESIGN: Nominal group technique. SETTING & PARTICIPANTS: Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). METHODOLOGY: Identification and ranking of outcomes. ANALYTICAL APPROACH: Mean rank score (of 10) for top 10 outcomes and thematic analysis. RESULTS: 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. LIMITATIONS: Only English-speaking participants were eligible. CONCLUSIONS: Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.
BACKGROUND: In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients' priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. STUDY DESIGN: Nominal group technique. SETTING & PARTICIPANTS: Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). METHODOLOGY: Identification and ranking of outcomes. ANALYTICAL APPROACH: Mean rank score (of 10) for top 10 outcomes and thematic analysis. RESULTS: 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. LIMITATIONS: Only English-speaking participants were eligible. CONCLUSIONS: Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.
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