Wheeler, DC; Tong, A; Wolfgang, C; van Biesen5, W; Tugwell, P; Manns, B; Hemmelgarn, B; ... Craig, JC; + view all Wheeler, DC; Tong, A; Wolfgang, C; van Biesen5, W; Tugwell, P; Manns, B; Hemmelgarn, B; Harris, T; Crowe, S; Ju, A; O'Lone, E; Evangelidis, N; Craig, JC; - view fewer (2017) Nephrologists' perspectives on defining and applying patient-centered outcomes in hemodialysis. Clinical Journal of the American Society of Nephrology , 12 (3) pp. 454-466. 10.2215/​CJN.08370816.

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Abstract

Background and objectives: Patient-centeredness is widely advocated as a cornerstone of healthcare but is yet to be fully realized, including in nephrology. This study aims to describe nephrologists’ perspectives on defining and implementing patient-centered outcomes in hemodialysis. / Design, setting, and participants: Face-to-face, semi-structured interviews were conducted with 58 nephrologists from 27 dialysis units across nine countries including the United States, 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, supporting shared decision-making); optimizing well-being (respecting patient choice, focusing on symptomology, perceptible and tangible, judging relevance and consequence); comprehending extensive heterogeneity of clinical and quality of life outcomes (distilling diverse priorities, highly individualized, attempting to specify outcomes, 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, paradoxical dilemma); and undermined by system pressures (adhering to overarching policies, misalignment with mandates, resource constraints). / Conclusions: Improving patient-centered outcomes is regarded by nephrologists to encompass strategies that address patient goals, and improve well-being 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.

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