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Patient-Reported Outcome Measures for Fatigue in Patients on Hemodialysis: A Systematic Review

2018 , Ju, Angela , Unruh, Mark , Davison, Sara N. , Dapueto, Juan , Dew, Mary Amanda , Fluck, Richard , Germain, Michael , Jassal, Sarbjit Vanita , Obrador, Gregorio , O’Donoghue, Donal , Tugwell, Peter , Craig, Jonathan C. , Ralph, Angelique F. , Howell, Martin , Tong, Allison

Background: Fatigue is a prevalent and debilitating symptom in patients receiving hemodialysis. We aimed to identify and evaluate the characteristics and psychometric properties of patient-reported outcome measures for fatigue in patients receiving hemodialysis, to inform the selection of a robust and feasible measure for use in randomized trials in hemodialysis. Study Design: Systematic review of outcome measures for fatigue. Setting & Population: Patients receiving hemodialysis. Search Strategy & Sources: MEDLINE, Embase, PsycINFO, and CINAHL from inception to April 2017 were searched for all studies that reported fatigue in patients receiving hemodialysis. Analytical Approach: With a focus on addressing methods, items (individual questions) from all measures were categorized into content and measurement dimensions of fatigue. We assessed the general characteristics (eg, number of items and cost) and psychometric properties of all measures. © American Journal of Kidney Diseases

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Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report

2018 , Ju, Angela , Unruh, Mark , Davison, Sara , Dapueto , Juan , Dew, Mary Amanda , Fluck, Richard , Germain, Michael , Jassal, Sarbjit V. , Obrador, Gregorio , O’Donoghue, Donal , Josephson, Michelle A. , Craig, Jonathan C. , Viecelli, Andrea K. , O’Lone, Emma , Hanson, Camilla S. , Manns, Braden , Sautenet, Benedicte , Howell, Martin , Reddy, Bharathi , Wilkie, Caroline , Rutherford, Claudia , Tong, Allison , Levin, Adeera

Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient’s ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis. © 2018 by the National Kidney Foundation, Inc.

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Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies

2019 , Jacobson, Jack , Ju, Angela , Baumgart, Amanda , Unruh, Mark , O’Donoghue, Donal , Obrador, Gregorio , Craig, Jonathan C. , Dapueto, Juan M. , Dew, Mary Amanda , Germain, Michael , Fluck, Richard , Davison, Sara N. , Jassal, Sarbjit Vanita , Manera, Karine , Smith, Alice C. , Tong, Allison

Rationale & objective: Fatigue is a highly prevalent and debilitating symptom in patients on hemodialysis therapy due to the uremic milieu, the hemodialysis treatment itself, and other comorbid conditions. However, fatigue remains underrecognized and the consequences are underappreciated because it may not be visible in clinical settings. This study aims to describe the experience that patients undergoing maintenance hemodialysis have with fatigue. Study design: Systematic review and thematic synthesis of qualitative studies. Setting & study populations: Patients undergoing hemodialysis. Search strategy & sources: MEDLINE, Embase, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched from inception to October 2018. Data extraction: All text from the results/conclusion of the primary studies. Analytical approach: Thematic synthesis. Copyright © 2019 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

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Identifying dimensions of fatigue in haemodialysis important to patients, caregivers and health professionals: An international survey

2019 , Ju, Angela , Unruh, Mark , Davison, Sara N. , Dapueto, Juan , Dew, Mary A. , Fluck, Richard , Germain, Michael , Jassal, Sarbjit V. , Obrador, Gregorio , O'Donoghue, Donal J. , Howell, Martin , O'Lone, Emma , Shen, Jenny I. , Craig, Jonathan C. , Tong, Allison

Background: Patient-reported outcome measures of fatigue used in research in haemodialysis vary widely in the dimensions assessed; and the importance of these dimensions to patients and health professionals is unknown. This study aimed to identify the most important dimensions of fatigue to assess in patients on haemodialysis participating in trials. Methods: In an international survey, patients/caregivers and health professionals rated the absolute and relative importance of content and measurement dimensions to include in a core outcome measure of fatigue. A 9-point Likert scale (7-9 indicating critical importance) was used to assess absolute importance and best-worst scale was used to assess importance of each dimension compared to others. © 2019 Asian Pacific Society of Nephrology.