title: Nephrologists' Perspectives on Defining and Applying Patient-Centered Outcomes in Hemodialysis.
abstract: OBJECTIVE
  Patient centeredness is widely advocated as a cornerstone of health care, but it is yet to be fully realized, including in nephrology. Our study aims to describe nephrologists' perspectives on defining and implementing patient-centered outcomes in hemodialysis.
  
  
  METHODS
  Face-to-face, semistructured interviews were conducted with 58 nephrologists from 27 dialysis units across nine countries, including the United States, the United Kingdom, Australia, Austria, Belgium, Canada, Germany, Singapore, and New Zealand. Transcripts were thematically analyzed.
  
  
  RESULTS
  We identified five themes on defining and implementing patient-centered outcomes in hemodialysis: explicitly prioritized by patients (articulated preferences and goals, ascertaining treatment burden, defining hemodialysis success, distinguishing a physician-patient dichotomy, and supporting shared decision making), optimizing wellbeing (respecting patient choice, focusing on symptomology, perceptible and tangible, and judging relevance and consequence), comprehending extensive heterogeneity of clinical and quality of life outcomes (distilling diverse priorities, highly individualized, attempting to specify outcomes, and broadening context), clinically hamstrung (professional deficiency, uncertainty and complexity in measurement, beyond medical purview, specificity of care, mechanistic mindset [focused on biochemical targets and comorbidities], avoiding alarm, and paradoxical dilemma), and undermined by system pressures (adhering to overarching policies, misalignment with mandates, and resource constraints).
  
  
  CONCLUSIONS
  Improving patient-centered outcomes is regarded by nephrologists to encompass strategies that address patient goals and improve wellbeing and treatment burden in patients on hemodialysis. However, efforts are hampered by ambiguities about how to prioritize, measure, and manage the plethora of critical comorbidities and broader quality of life outcomes in a care setting that is technically demanding and driven by biochemical targets. Identifying critical patient-important outcomes and mechanisms for integrating them into practice may help to deliver patient-centered care in hemodialysis and other chronic disease settings.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas.
authors.forename: Wolfgang C
authors.initials: WC
authors.lastname: Winkelmayer
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: Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Peter
authors.initials: P
authors.lastname: Tugwell
authors.affiliation: Departments of Medicine and.|Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Braden
authors.initials: B
authors.lastname: Manns
authors.affiliation: Departments of Medicine and.|Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Brenda
authors.initials: B
authors.lastname: Hemmelgarn
authors.affiliation: Polycystic Kidney Disease International, London, United Kingdom; and.
authors.forename: Tess
authors.initials: T
authors.lastname: Harris
authors.affiliation: Crowe Associates Ltd, Oxford, United Kingdom.
authors.forename: Sally
authors.initials: S
authors.lastname: Crowe
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors.forename: Angela
authors.initials: A
authors.lastname: Ju
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors.forename: Emma
authors.initials: E
authors.lastname: O'Lone
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors.forename: Nicole
authors.initials: N
authors.lastname: Evangelidis
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D002983:Clinical Competence; D005260:Female; D006295:Health Resources / Q000600:supply & distribution; D006304:Health Status; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009398:Nephrology; D010347:Patient Care Planning; D063868:Patient Outcome Assessment; D010358:Patient Participation; D057240:Patient Preference; D010817:Physician-Patient Relations; D017410:Practice Guidelines as Topic; D036301:Qualitative Research; D011788:Quality of Life; D006435:Renal Dialysis
keywords: Australia; Austria; Belgium; Canada; Chronic Disease; Comorbidity; Decision Making; Germany; Goals; Great Britain; Humans; New Zealand; Patient Selection; Patient-Centered Care; Physician-Patient Relations; Singapore; Uncertainty; United States; hemodialysis; nephrology; qualitative research; quality of life; renal dialysis