title: Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study.
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.
  
  
  METHODS
  Nominal group technique.
  
  
  METHODS
  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).
  
  
  METHODS
  Identification and ranking of outcomes.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Rachel
authors.initials: R
authors.lastname: Urquhart-Secord
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: 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.
authors.forename: Brenda
authors.initials: B
authors.lastname: Hemmelgarn
authors.affiliation: 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.
authors.forename: Helen
authors.initials: H
authors.lastname: Tam-Tham
authors.affiliation: 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.
authors.forename: Braden
authors.initials: B
authors.lastname: Manns
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Howell
authors.affiliation: Monash Medical Centre and Monash University, Clayton, Australia; Department of Epidemiology & Preventative Medicine, Monash University, Clayton, Australia.
authors.forename: Kevan R
authors.initials: KR
authors.lastname: Polkinghorne
authors.affiliation: Monash Medical Centre and Monash University, Clayton, Australia; Department of Epidemiology & Preventative Medicine, Monash University, Clayton, Australia.
authors.forename: Peter G
authors.initials: PG
authors.lastname: Kerr
authors.affiliation: Centre for Transplantation and Renal Research, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: David C
authors.initials: DC
authors.lastname: Harris
authors.affiliation: Department of Medicine, University of Alberta, Edmonton, Canada.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Thompson
authors.affiliation: Faculty of Nursing, University of Alberta, Edmonton, Canada.
authors.forename: Kara
authors.initials: K
authors.lastname: Schick-Makaroff
authors.affiliation: Centre for Nephrology, University College London, London, United Kingdom.
authors.forename: David C
authors.initials: DC
authors.lastname: Wheeler
authors.affiliation: Renal Division, Ghent University Hospital, Ghent, Belgium.
authors.forename: Wim
authors.initials: W
authors.lastname: van Biesen
authors.affiliation: Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX.
authors.forename: Wolfgang C
authors.initials: WC
authors.lastname: Winkelmayer
authors.affiliation: 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.
authors.forename: David W
authors.initials: DW
authors.lastname: Johnson
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Howard
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Nicole
authors.initials: N
authors.lastname: Evangelidis
authors.affiliation: 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.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D002170:Canada; D017028:Caregivers; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000628:therapy*; D055815:Young Adult
keywords: Patient-centered outcomes; caregivers; clinical research priorities; end-stage renal disease (ESRD); fatigue; focus group; hemodialysis; nominal group; outcome measurement; patient wellbeing; patients; qualitative research; quality of life; surrogate end points