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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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Validation of a core patient-reported outcome measure for fatigue in patients receiving hemodialysis : the SONG-HD fatigue instrument

2020 , Ju, Angela , Teixeira-Pinto, Armando , Tong, Allison , Smith, Alice C. , Unruh, Mark , Davison, Sara N. , Dapueto, Juan , Dew, Mary Amanda , Fluck, Richard , Germain, Michael J. , Jassal, Sarbjit V. , Obrador, Gregorio , O’Donoghue, Donal , Viecelli, Andrea K. , Strippoli, Giovanni , Ruospo, Marinella , Timofte, Delia , Sharma, Ankit , Au, Eric , Howell, Martin , Costa, Daniel S.J. , Anumudu, Samaya , Craig, Jonathan C. , Rutherford, Claudia

Background and objectives Fatigue is a very common and debilitating symptom and identified by patients as a critically important core outcome to be included in all trials involving patients receiving hemodialysis. A valid, standardized measure for fatigue is needed to yield meaningful and relevant evidence about this outcome. This study validated a core patient-reported outcome measure for fatigue in hemodialysis. Design, setting, participants, & measurements A longitudinal cohort study was conducted to assess the validity and reliability of a new fatigue measure (Standardized Outcomes in Nephrology-Hemodialysis Fatigue [SONGHD Fatigue]). Eligible and consenting patients completed the measure at three time points: baseline, a week later, and 12 days following the second time point. Cronbach α and intraclass correlation coefficient were calculated to assess internal consistency, and Spearman rho was used to assess convergent validity. Confirmatory factor analysis was also conducted. Hemodialysis units in the United Kingdom, Australia, and Romania participated in this study. Adult patients aged 18 years and over who were English speaking and receiving maintenance hemodialysis were eligible to participate. Standardized Outcomes in Nephrology-Hemodialysis, the Visual Analog Scale for fatigue, the 12-Item Short Form Survey, and Functional Assessment of Chronic Illness Therapy–Fatigue were used. Results In total, 485 participants completed the study across the United Kingdom, Australia, and Romania. Psychometric assessment demonstrated that Standardized Outcomes in Nephrology-Hemodialysis is internally consistent (Cronbach α =0.81–0.86) and stable over a 1-week period (intraclass correlation coefficient =0.68–0.74). The measure demonstrated convergence with Functional Assessment of Chronic Illness Therapy–Fatigue and had moderate correlations with other measures that assessed related but not the same concept (the 12-Item Short Form Survey and the Visual Analog Scale). Confirmatory factor analysis supported the one-factor model. Conclusions SONG-HD Fatigue seems to be a reliable and valid measure to be used in trials involving patients receiving hemodialysis. © 2020 by the American Society of Nephrology.

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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.

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Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure

2024 , Davison, Sara N. , Pommer, Wolfgang , Brown, Mark A. , Douglas, Claire A. , Gelfand, Samantha L. , Gueco, Irmingarda P. , Hole, Barnaby D. , Homma, Sumiko , Kazancıoğlu, Rümeyza T. , Kitamura, Harumi , Koubar, Sahar H. , Krause, Rene , Li, Kelly C. , Lowney, Aoife C. , Nagaraju, Shankar P. , Niang, Abdou , Obrador, Gregorio , Ohtake, Yoichi , Schell, Jane O. , Scherer, Jennifer S. , Smyth, Brendan , Tamba, Kaichiro , Vallath, Nandini , Wearne, Nicola , Zakharova, Elena , Zúñiga, Carlos , Brennan, Frank P.

Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings. ©Elsevier

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Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care

2015 , Davison, Sara N. , Levin, Adeera , Moss, Alvin H. , Jha, Vivekanand , Brown, Edwina A. , Brennan, Frank , Murtagh, Fliss E.M. , Naicker, Saraladevi , Germain, Michael J. , O'Donoghue, Donal J. , Morton, Rachael L. , Obrador, Gregorio

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable. Copyright © Elsevier B.V., its licensors, and contributors