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Background: Conservative kidney management (CKM) describes supportive care for people living with kidney failure who choose not to receive or are unable to access kidney replacement therapy (KRT). This study captured the global availability of CKM services and funding., Methods: Data came from the International Society of Nephrology Global Kidney Health survey conducted between June and September 2022. Availability of CKM, infrastructure, guidelines, medications and training were evaluated., Results: CKM was available in some form in 61% of the 165 responding countries. CKM chosen through shared decision-making was available in 53%. Choice-restricted CKM-for those unable to access KRT-was available in 39%. Infrastructure to provide CKM chosen through shared decision-making was associated with national income level, reported as being "generally available" in most healthcare settings for 71% of high-income countries, 50% of upper-middle-income countries, 33% of lower-middle-income countries and 42% of low-income countries. For choice-restricted CKM, these figures were 29%, 50%, 67% and 58%, respectively. Essential medications for pain and palliative care were available in just over half of the countries, highly dependent upon income setting. Training for caregivers in symptom management in CKM was available in approximately a third of countries., Conclusions: Most countries report some capacity for CKM. However, there is considerable variability in terms of how CKM is defined, as well as what and how much care is provided. Poor access to CKM perpetuates unmet palliative care needs, and must be addressed, particularly in low-resource settings where death from untreated kidney failure is common., (© The Author(s) 2024. Published by Oxford University Press on behalf of the ERA.)

Objectives: Prognostic tools with evidence for external validity in routine clinical practice are needed to align care with patients' preferences and deliver timely supportive services. Current models have limited, if any, evidence for external validity and none have been implemented and evaluated in clinical practice on a large scale. This study sought to provide evidence for external validity in a real life setting of the Cohen prognostic model that integrates actuarial factors with the 'Surprise Question' to assess 6-month, 12-month and 18-month survival of prevalent haemodialysis patients., Methods: Cross-sectional study of 1372 patients in a Canadian university-based programme between 2010 and 2019. Survival probabilities were compared with observed survival. Discrimination and calibration were assessed through predicted risk-stratified observed survival, cumulative AUC, Somer's Dxy and a calibration slope estimate., Results: Discrimination performance was moderate with a C statistic of 0.71-0.72 for all three time points. The model overpredicted mortality risk with the best predictive accuracy for 6- month survival. The differences between observed and mean predicted survival at 6 months, 12 months and 18 months were 3.2%, 8.8% and 12.9%, respectively. Kaplan-Meier curves stratified by Cox-based risk group showed good discrimination between high-risk and low-risk patients with HR estimates (95% CI): C2 vs C1 3.07 (1.57-5.99), C3 vs C1 5.85 (3.06-11.17), C4 vs C1 13.24 (6.91-25.34))., Conclusions: The Cohen prognostic model can be incorporated easily into routine dialysis care to identify patients at high risk for death over 6 months, 12 months and 18 months and help target vulnerable patients for timely supportive care interventions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Many people across the spectrum of chronic kidney disease (CKD) experience a large symptom burden. Measuring symptoms can be a way of responding to the concerns of patients and their priorities of care and may help to improve overall outcomes, including health-related quality of life. The objective of this article is to discuss approaches to measuring symptoms across the spectrum of CKD and to highlight strategies to facilitate the incorporation of routine symptom assessment into kidney care. Specifically, we discuss the use of validated patient-reported outcome measures in CKD as they relate to measuring symptoms, including their benefits and limitations, and describe commonly used patient-reported outcome measures. We discuss potential barriers that should be considered when contemplating the development of a program to routinely measure and address symptoms. Finally, we outline a systematic, stepwise approach to measuring symptoms with implementation strategies to address the common barriers. Although the principles outlined in this article can be applied to research and audit, the principal focus is on symptom measurement aimed at informing clinical practice and directly improving patient outcomes., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

The International Society of Nephrology Global Kidney Health Atlas charts the availability and capacity of kidney care globally. In the North America and the Caribbean region, the Atlas can identify opportunities for kidney care improvement, particularly in Caribbean countries where structures for systematic data collection are lacking. In this third iteration, respondents from 12 of 18 countries from the region reported a 2-fold higher than global median prevalence of dialysis and transplantation, and a 3-fold higher than global median prevalence of dialysis centers. The peritoneal dialysis prevalence was lower than the global median, and transplantation data were missing from 6 of the 10 Caribbean countries. Government-funded payments predominated for dialysis modalities, with greater heterogeneity in transplantation payor mix. Services for chronic kidney disease, such as monitoring of anemia and blood pressure, and diagnostic capability relying on serum creatinine and urinalyses were universally available. Notable exceptions in Caribbean countries included non-calcium-based phosphate binders and kidney biopsy services. Personnel shortages were reported across the region. Kidney failure was identified as a governmental priority more commonly than was chronic kidney disease or acute kidney injury. In this generally affluent region, patients have better access to kidney replacement therapy and chronic kidney disease-related services than in much of the world. Yet clear heterogeneity exists, especially among the Caribbean countries struggling with dialysis and personnel capacity. Important steps to improve kidney care in the region include increased emphasis on preventive care, a focus on home-based modalities and transplantation, and solutions to train and retain specialized allied health professionals., (© 2024 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.)

Background: Communities of practice support evidence-based practice and can be, in and of themselves, applied learning spaces in organizations. However, the variety of ways that communities of practice can support learning health systems are poorly characterized. Furthermore, health system leaders have little guidance on designing and resourcing communities of practice to effectively serve learning health systems., Methods: We conducted a collective case study, examining a cross-section of Canadian-based communities of practice dedicated to supporting evidence-based practice. We held semi-structured interviews with 21 participants representing 16 communities of practice and 5 community of practice facilitation platforms that provide administration support, tools, and oversight for multiple communities of practice. Using the Conceptual Framework for Value-Creating Learning Health Systems, we characterized the numerous roles that communities of practice can take to support learning health systems. We also pulled insights from the interviews on properly resourcing and managing communities of practice., Results: Communities of practice can advance learning health systems across learning cycles (ie, identifying learning priorities, generating data and knowledge, and implementing and evaluating change). They also act as important infrastructure required to share and coordinate across learning health systems. Community of practice facilitation platforms reduce staff members' workload, in turn, creating greater efficiency and effectiveness across community of practice lifespans. Furthermore, these platforms can be a mechanism to coordinate critical activities (e.g., priority alignment, knowledge brokerage/sharing across the broader system)., Conclusion: To the authors' knowledge, this is the first study to characterize communities of practice across the learning health system landscape. With these results, learning health system leaders have a catalog that clarifies the potential communities of practice roles in knowledge generation, implementation, and uptake of new evidence. Furthermore, the results provide evidence that organizational investment in overarching community of practice facilitation platforms will strengthen and accelerate community of practice supports in learning health systems., Competing Interests: The authors of this article have no conflicts of interest to declare., (© 2024 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)

Background: Since 2015, the International Society of Nephrology (ISN) Global Kidney Health Atlas (ISN-GKHA) has spearheaded multinational efforts to understand the status and capacity of countries to provide optimal kidney care, particularly in low-resource settings. In this iteration of the ISN-GKHA, we sought to extend previous findings by assessing availability, accessibility, quality, and affordability of medicines, kidney replacement therapy (KRT), and conservative kidney management (CKM)., Methods: A consistent approach was used to obtain country-level data on kidney care capacity during three phases of data collection in 2016, 2018, and 2022. The current report includes a detailed literature review of published reports, databases, and registries to obtain information on the burden of chronic kidney disease and estimate the incidence and prevalence of treated kidney failure. Findings were triangulated with data from a multinational survey of opinion leaders based on the WHO's building blocks for health systems (ie, health financing, service delivery, access to essential medicines and health technology, health information systems, workforce, and governance). Country-level data were stratified by the ISN geographical regions and World Bank income groups and reported as counts and percentages, with global, regional, and income level estimates presented as medians with interquartile ranges., Findings: The literature review used information on prevalence of chronic kidney disease from 161 countries. The global median prevalence of chronic kidney disease was 9·5% (IQR 5·9-11·7) with the highest prevalence in Eastern and Central Europe (12·8%, 11·9-14·1). For the survey analysis, responses received covered 167 (87%) of 191 countries, representing 97·4% (7·700 billion of 7·903 billion) of the world population. Chronic haemodialysis was available in 162 (98%) of 165 countries, chronic peritoneal dialysis in 130 (79%), and kidney transplantation in 116 (70%). However, 121 (74%) of 164 countries were able to provide KRT to more than 50% of people with kidney failure. Children did not have access to haemodialysis in 12 (19%) of 62 countries, peritoneal dialysis in three (6%) countries, or kidney transplantation in three (6%) countries. CKM (non-dialysis management of people with kidney failure chosen through shared decision making) was available in 87 (53%) of 165 countries. The annual median costs of KRT were: US$19 380 per person for haemodialysis, $18 959 for peritoneal dialysis, and $26 903 for the first year of kidney transplantation. Overall, 74 (45%) of 166 countries allocated public funding to provide free haemodialysis at the point of delivery; use of this funding scheme increased with country income level. The median global prevalence of nephrologists was 11·8 per million population (IQR 1·8-24·8) with an 80-fold difference between low-income and high-income countries. Differing degrees of health workforce shortages were reported across regions and country income levels. A quarter of countries had a national chronic kidney disease-specific strategy (41 [25%] of 162) and chronic kidney disease was recognised as a health priority in 78 (48%) of 162 countries., Interpretation: This study provides new information about the global burden of kidney disease and its treatment. Countries in low-resource settings have substantially diminished capacity for kidney care delivery. These findings have major policy implications for achieving equitable access to kidney care., Funding: International Society of Nephrology., Competing Interests: Declaration of interests AKB reports having received consultancy and honoraria fees from Amgen and Otsuka, consultancy fees from Bayer and GlaxoSmithKline, and grants from Canadian Institute of Health Research and Heart and Stroke Foundation of Canada, outside the submitted work; AKB is also Associate Editor of the Canadian Journal of Kidney Health and Disease and Co-chair of the ISN-GKHA. SD, SA, JD, and CM report having received employee fees from the ISN, outside the submitted work. YC reports having received grants and other fees from Baxter Healthcare, outside the submitted work. MRD reports having received consultancy fees from National Renal Care, outside the submitted work, and is the Chair of the African Renal Registry and Co-chair of the South African Renal Registry. SND reports having received research funding from Canadian Institutes of Health Research, Alberta Innovates, and Alberta Health Services outside the submitted work. HH reports having received personal fees from AWAK technology and Baxter Healthcare, and non-financial support from Mologic, outside the submitted work. VJ reports having received personal fees from GlaxoSmithKline, AstraZeneca, Baxter Healthcare, Visterra, Biocryst, Chinook, Vera, and Bayer, paid to his institution, outside the submitted work. MN reports having received grants and personal fees from KyowaKirin, Boehringer Ingelheim, Chugai, Daiichi Sankyo, Torii, JT, and Mitsubishi Tanabe, grants from Takeda and Bayer, and personal fees from Astellas, Akebia, AstraZeneca, and GlaxoSmithKline, outside the submitted work. DWJ reports having received consultancy fees, research grants, speaker's honoraria and travel sponsorships from Baxter Healthcare and Fresenius Medical Care, consultancy fees from AstraZeneca, Bayer, and AWAK, speaker's honoraria from ONO and Boehringer Ingelheim & Lilly, and travel sponsorships from Ono and Amgen, outside the submitted work. DWJ is also a current recipient of an Australian National Health and Medical Research Council Leadership Investigator Grant, outside the submitted work. All other authors declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Conservative kidney management (CKM) is an active treatment for kidney failure (KF) for people who will either not benefit from kidney replacement therapy (KRT), do not wish to pursue KRT, or do not have access to KRT. CKM aims to improve patients' quality-of-life through meticulous attention to symptom management. KF is associated with a high symptom burden globally that is experienced across age, sex, and race with chronic pain being one of the most severe and common symptoms. The delivery of CKM therefore requires the integration of effective pain management strategies. This review will provide a detailed insight into CKM globally and will offer an approach to pain management for people with KF who are receiving CKM. Specifically, this review will provide an overview of the clinical characteristics of people receiving CKM across both high and low resource settings and the epidemiology of pain in this population. While it will provide some high-level considerations for the non-pharmacologic management of pain, it will focus predominantly on pharmacologic approaches. This will include considerations of non-opioid analgesics and strategies for the use of opioids in people receiving CKM. Furthermore, we will explore global disparities in kidney care, CKM, and pain management resources, including access to opioids and will discuss some of the additional challenges faced in low resource settings.

Introduction: Implementation of health innovations is inherently collaborative, requiring trans-sectoral partnerships between implementation researchers, innovation teams, and implementation practitioners. Implementation science has been shown to improve implementation successes; however, challenges that hinder partnerships to advance implementation science continue to persist. Using a whole-system approach to assess and respond to implementation science partnership barriers may shed light on effective responses., Methods: We conducted a case study of Alberta's learning health system, using semi-structured group and individual interviews to create a nuanced understanding of the considerations required for implementation research collaborations. We interviewed 53 participants representing 21 offices in the health system, academia, professional associations, and government who regularly plan, evaluate, and/or study health system implementation initiatives in Alberta. Using the Partnership Model for Research Capacity Building, we identified current facilitators and challenges for partnerships for conducting and using implementation science, at different levels of Alberta's health-research ecosystem., Results: Alberta's healthcare system is well set up to readily embed intervention effectiveness and efficacy research. Infrastructure was also in place to strengthen implementation practice. However, weaknesses around exchanging knowledge and skills, providing feedback and mentoring, and accommodating diversity affected the ability of both individuals and teams to build implementation science capacity. Without this capacity, teams could not participate in embedded implementation research collaborations. We report the response of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit to these barriers to provide practical guidance on various program options to strengthen individual- and organization-level implementation science capacity., Discussion: This study applied a whole-system approach to assess factors across Alberta's health-research ecosystem, which affect partnerships to advance implementation science. Our findings illustrated that partnership considerations go beyond interpersonal factors and include system-wide considerations. With the results, health organization leaders have (1) a method for assessing organizational capability to readily embed implementation research and (2) a catalog of potential responses to create conditions to readily engage with implementation science in their day-to-day implementation processes., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2024 Brooks, Alba, Thomson, Davison and Storey.)

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., (Copyright © 2023 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.)

Context: People with advanced chronic kidney disease (CKD) have significant morbidity, yet for many, access to palliative care occurs late, if at all., Objectives: This study sought to examine criteria for referral to specialist palliative care for adults with advanced CKD with a view to improving use of these essential services., Methods: Systematic review of studies detailing referral criteria to palliative care in advanced CKD conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guideline and registered (PROSPERO: CRD42021230751)., Data Sources: Electronic databases (Ovid, MEDLINE, Ovid Embase, and PubMed) were used to identify potential studies, which were subjected to double review, data extraction, thematic coding, and descriptive analyses., Results: Searches yielded 650 unique titles ultimately resulting in 56 studies addressing referral criteria to specialist palliative care in advanced CKD. Of 10 categories of referral criteria, most commonly discussed were: Critical times of treatment decision making (n = 23, 41%); physical or emotional symptoms (n = 22, 39%); limited prognosis (n = 18, 32%); patient age and comorbidities (n = 18, 32%); category of CKD/ biochemical criteria (n = 13, 23%); functional decline (n = 13, 23); psychosocial needs (n = 9, 16%); future care planning (n = 9, 16%); anticipated decline in illness course (n = 8, 14%); and hospital use (n = 8, 14%)., Conclusion: Clinicians consider referral to specialist palliative care for a wide range of reasons, with many related to care needs. As palliative care continues to integrate with nephrology, our findings represent a key step towards developing consensus criteria to standardize referral for patients with chronic kidney diseases., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Individuals with kidney failure undergoing maintenance dialysis frequently report a high symptom burden that can interfere with functioning and diminish life satisfaction. Until recently, the focus of nephrology care for dialysis patients has been related primarily to numerical targets for laboratory measures, and outcomes such as cardiovascular disease and mortality. Routine symptom assessment is not universal or standardized in dialysis care. Even when symptoms are identified, treatment options are limited and are initiated infrequently, in part because of a paucity of evidence in the dialysis population and the complexities of medication interactions in kidney failure. In May of 2022, Kidney Disease: Improving Global Outcomes (KDIGO) held a Controversies Conference-Symptom-Based Complications in Dialysis-to identify the optimal means for diagnosing and managing symptom-based complications in patients undergoing maintenance dialysis. Participants included patients, physicians, behavioral therapists, nurses, pharmacists, and clinical researchers. They outlined foundational principles and consensus points related to identifying and addressing symptoms experienced by patients undergoing dialysis and described gaps in the knowledge base and priorities for research. Healthcare delivery and education systems have a responsibility to provide individualized symptom assessment and management. Nephrology teams should take the lead in symptom management, although this does not necessarily mean taking ownership of all aspects of care. Even when options for clinical response are limited, clinicians should focus on acknowledging, prioritizing, and managing symptoms that are most important to individual patients. A recognized factor in the initiation and implementation of improvements in symptom assessment and management is that they will be based on locally existing needs and resources., (Copyright © 2023 Kidney Disease: Improving Global Outcomes (KDIGO). Published by Elsevier Inc. All rights reserved.)

Background: Cannabis is frequently used recreationally and medicinally, including for symptom management in patients with kidney disease., Methods: We elicited the views of Canadian adults with kidney disease regarding their cannabis use. Participants were asked whether they would try cannabis for anxiety, depression, restless legs, itchiness, fatigue, chronic pain, decreased appetite, nausea/vomiting, sleep, cramps and other symptoms. The degree to which respondents considered cannabis for each symptom was assessed with a modified Likert scale ranging from 1 to 5 (1, definitely would not; 5, definitely would). Multilevel multivariable linear regression was used to identify respondent characteristics associated with considering cannabis for symptom control., Results: Of 320 respondents, 290 (90.6%) were from in-person recruitment (27.3% response rate) and 30 (9.4%) responses were from online recruitment. A total of 160/320 respondents (50.2%) had previously used cannabis, including smoking [140 (87.5%)], oils [69 (43.1%)] and edibles [92 (57.5%)]. The most common reasons for previous cannabis use were recreation [84/160 (52.5%)], pain alleviation [63/160 (39.4%)] and sleep enhancement [56/160 (35.0%)]. Only 33.8% of previous cannabis users thought their physicians were aware of their cannabis use. More than 50% of respondents probably would or definitely would try cannabis for symptom control for all 10 symptoms. Characteristics independently associated with interest in trying cannabis for symptom control included symptom type (pain, sleep, restless legs), online respondent {β = 0.7 [95% confidence interval (CI) 0.1-1.4]} and previous cannabis use [β = 1.2 (95% CI 0.9-1.5)]., Conclusions: Many patients with kidney disease use cannabis and there is interest in trying cannabis for symptom control., (© The Author(s) 2022. Published by Oxford University Press on behalf of the ERA.)

Background: Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-specific pain questionnaire: the ADPKD Pain and Discomfort Scale (ADPKD-PDS)., Methods: Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity., Results: In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period., Conclusions: The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of American Society of Nephrology.)

Background and Objectives: Patient-reported outcome measures invite patients to self-report aspects of their quality of life and have been reported to enhance communication with clinicians. We aimed to examine how routine use of patient-reported outcome measures in in-center hemodialysis units influenced patient-clinician communication., Design, Setting, Participants, & Measurements: A concurrent, longitudinal, mixed-methods approach was used. We used data from a cluster randomized controlled trial of 17 hemodialysis units in northern Alberta that introduced a patient-reported outcome measures intervention. Patient-clinician communication was assessed using a modified Communication Assessment Tool. Using interpretive description, we explored patients' and nurses' perceptions of communication pertaining to routine patient-reported outcome measure use. Through purposeful sampling, we interviewed ten patients and eight nurses and conducted six observations in the dialysis units, which were documented in field notes. We reviewed 779 patient responses to open-ended survey questions from randomized controlled trial data. Qualitative data were thematically analyzed., Results: Overall, patient-reported outcome measure use did not substantively improve patient-clinician communication. There was a small positive change in mean total Communication Assessment Tool scores (range, 1-5) from baseline to 12 months in patient-reported outcome measure use units (0.25) but little difference from control group units that did not use patient-reported outcome measures (0.21). The qualitative findings provide in-depth insights into why patient-reported outcome measure use did not improve patient-clinician communication. The purpose of patient-reported outcome measure use was not always understood by patients and clinicians; patient-reported outcome measures were not implemented as originally intended in the trial, despite clinician training; there were challenges using patient-reported outcome measures as a means to communicate; and patient-reported outcome measure use was perceived to have limited value., Conclusions: While patient-reported outcome measures use did not improve patient-clinician communication, qualitative data suggest implementation challenges, including limited clarity of purpose and perceived limited value, that may have limited the effectiveness of the intervention., (Copyright © 2022 by the American Society of Nephrology.)

Background: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization., Methods: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city)., Results: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20)., Interpretation: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD., Competing Interests: Competing interests: Jessica Simon reports grants from Canadian Institutes of Health Research, Alberta Health, Canadian Foundation for Healthcare Improvement and Choosing Wisely Alberta via its partners: the Alberta Medical Association, Alberta Health, Alberta Health Services and the College of Physicians and Surgeons of Alberta. Dr. Simon reports speaker honoraria from Queen’s University and a role as physician consultant, Advance Care Planning and Goals of Care, Alberta Health Services, Calgary Zone. Dr. Simon also reports unpaid roles as co-chair, Advisory Committee, Advance Care Planning Alberta; advisory committee member, Advance Care Planning Canada; and committee member, Advance Care Planning International. No other competing interests were declared., (© 2022 CMA Impact Inc. or its licensors.)

Background: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms., Methods: This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire., Results: Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire., Conclusions: PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. A higher resolution version of the Graphical abstract is available as Supplementary information., (© 2021. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Importance: An understanding of the long-term outcomes of patients with advanced chronic kidney disease not treated with maintenance dialysis is needed to improve shared decision-making and care practices for this population., Objective: To evaluate survival, use of health care resources, changes in quality of life, and end-of-life care of patients with advanced kidney disease who forgo dialysis., Evidence Review: MEDLINE, Embase (Excerpta Medica Database), and CINAHL (Cumulative Index of Nursing and Allied Health Literature) were searched from inception through December 3, 2021, for all English language longitudinal studies of adults in whom there was an explicit decision not to pursue maintenance dialysis. Two investigators independently reviewed all studies and selected those reporting survival, use of health care resources, changes in quality of life, or end-of-life care during follow-up. Studies of patients who initiated and then discontinued maintenance dialysis and patients in whom it was not clear that there was an explicit decision to forgo dialysis were excluded. One author abstracted all study data, of which 12% was independently adjudicated by a second author (<1% error rate)., Findings: Forty-one cohort studies comprising 5102 patients (range, 11-812 patients) were included in this systematic review (5%-99% men; mean age range, 60-87 years). Substantial heterogeneity in study designs and measures used to report outcomes limited comparability across studies. Median survival of cohorts ranged from 1 to 41 months as measured from a baseline mean estimated glomerular filtration rate ranging from 7 to 19 mL/min/1.73 m2. Patients generally experienced 1 to 2 hospital admissions, 6 to 16 in-hospital days, 7 to 8 clinic visits, and 2 emergency department visits per person-year. During an observation period of 8 to 24 months, mental well-being improved, and physical well-being and overall quality of life were largely stable until late in the illness course. Among patients who died during follow-up, 20% to 76% had enrolled in hospice, 27% to 68% died in a hospital setting and 12% to 71% died at home; 57% to 76% were hospitalized, and 4% to 47% received an invasive procedure during the final month of life., Conclusions and Relevance: Many patients who do not pursue dialysis survived several years and experienced sustained quality of life until late in the illness course. Nonetheless, use of acute care services was common and intensity of end-of-life care highly variable across cohorts. These findings suggest that consistent approaches to the study of conservative kidney management are needed to enhance the generalizability of findings and develop models of care that optimize outcomes among conservatively managed patients.

Purpose: The Edmonton Symptom Assessment System-Revised: Renal (ESAS-r: Renal) is a disease-specific patient-reported outcome measure (PROM) that assesses symptoms common in chronic kidney disease (CKD). There is no preference-based scoring system for the ESAS-r: Renal or a mapping algorithm to predict health utility values. We aimed to develop a mapping algorithm from the ESAS-r: Renal to the Canadian EQ-5D-5L index scores., Methods: We used data from a multi-centre cluster randomized-controlled trial of the routine measurement and reporting of PROMs in hemodialysis units in Northern Alberta, Canada. In two arms of the trial, both the ESAS-r: Renal and the EQ-5D-5L were administered to CKD patients undergoing hemodialysis. We used data from one arm for model estimation, and data from the other for validation. We explored direct and indirect mapping models; model selection was based on statistical fit and predictive power., Results: Complete data were available for 506 patient records in the estimation sample and 242 in the validation sample. All models tended to perform better in patients with good health, and worse in those with poor health. Generalized estimating equations (GEE) and generalized linear model (GLM) on selected ESAS-r: Renal items were selected as final models as they fitted the best in estimation and validation sample., Conclusion: When only ESAS-r: Renal data are available, one could use GEE and GLM to predict EQ-5D-5L index scores for use in economic evaluation. External validation on populations with different characteristics is warranted, especially where renal-specific symptoms are more prevalent., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Purpose of the Program: This article provides guidance on optimizing the management of pediatric patients with end-stage kidney disease (ESKD) who will be or are being treated with any form of home or in-center dialysis during the COVID-19 pandemic. The goals are to provide the best possible care for pediatric patients with ESKD during the pandemic and ensure the health care team's safety., Sources of Information: The core of these rapid guidelines is derived from the Canadian Society of Nephrology (CSN) consensus recommendations for adult patients recently published in the Canadian Journal of Kidney Health and Disease ( CJKHD ). We also consulted specific documents from other national and international agencies focused on pediatric kidney health. Additional information was obtained by formal review of the published academic literature relevant to pediatric home or in-center hemodialysis., Methods: The Leadership of the Canadian Association of Paediatric Nephrologists (CAPN), which is affiliated with the CSN, solicited a team of clinicians and researchers with expertise in pediatric home and in-center dialysis. The goal was to adapt the guidelines recently adopted for Canadian adult dialysis patients for pediatric-specific settings. These included specific COVID-19-related themes that apply to dialysis in a Canadian environment, as determined by a group of senior renal leaders. Expert clinicians and nurses with deep expertise in pediatric home and in-center dialysis reviewed the revised pediatric guidelines., Key Findings: We identified 7 broad areas of home dialysis practice management that may be affected by the COVID-19 pandemic: (1) peritoneal dialysis catheter placement, (2) home dialysis training, (3) home dialysis management, (4) personal protective equipment, (5) product delivery, (6) minimizing direct health care providers and patient contact, and (7) caregivers support in the community. In addition, we identified 8 broad areas of in-center dialysis practice management that may be affected by the COVID-19 pandemic: (1) identification of patients with COVID-19, (2) hemodialysis of patients with confirmed COVID-19, (3) hemodialysis of patients not yet known to have COVID-19, (4) management of visitors to the dialysis unit, (5) handling COVID-19 testing of patients and staff, (6) safe practices during resuscitation procedures in a pandemic, (7) routine hemodialysis care, and (8) hemodialysis care under fixed dialysis resources. We make specific suggestions and recommendations for each of these areas., Limitations: At the time when we started this work, we knew that evidence on the topic of pediatric dialysis and COVID-19 would be severely limited, and our resources were also limited. We did not, therefore, do formal systematic review or meta-analysis. We did not evaluate our specific suggestions in the clinical environment. Thus, this article's advice and recommendations are primarily expert opinions and subject to the biases associated with this level of evidence. To expedite the publication of this work, we created a parallel review process that may not be as robust as standard arms' length peer-review processes., Implications: We intend these recommendations to help provide the best care possible for pediatric patients prescribed in-center or home dialysis during the COVID-19 pandemic, a time of altered priorities and reduced resources., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2021.)

Background: We aimed to describe (1) depressive and anxiety symptom burdens reported by adults on in-centre hemodialysis in Northern Alberta, Canada and (2) patients' and nurses' perceptions of managing such symptoms using routine patient-reported outcome measures (PROMs)., Methods: A longitudinal mixed methods approach was employed. Cluster randomized controlled trial data exposed the prevalence of positive screens (scores ≥ 3) for depressive (PHQ-2) and anxiety (GAD-2) symptoms. A descriptive qualitative approach was used to understand patients' and nurses' perceptions of managing these symptoms using the ESAS-r: Renal and EQ-5D-5L. Using purposeful sampling, patients and nurses were invited for interviews. Field notes were documented from 6 dialysis unit observations. Patients' responses to open-ended survey questions and nurses' electronic chart notes related to mental health were compiled. Thematic and content analyses were used., Results: Average age of patients (n = 408) was 64.0 years (SD 15.4), 57% were male, and 87% were not working; 29% screened positive for depressive symptoms, 21% for anxiety symptoms, and 16% for both. From patient (n = 10) and nurse (n = 8) interviews, unit observations, patient survey responses (n = 779) and nurses' chart notes (n = 84), we discerned that PROMs (ESAS-r: Renal/EQ-5D-5L) had the potential to identify and prompt management of mental health concerns. However, opinions differed about whether mental health was within kidney care scope. Nonetheless, participants agreed there was a lack of mental health resources., Conclusions: Prevalence of depressive and anxiety symptoms aligned with existing literature. Tensions regarding mental health management highlight the need for systemic decisions about how routine PROM use, including mental health assessment, may be optimized to meet patients' needs., (© 2021. The Author(s).)

Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients' symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients' health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients' wellbeing is key to improving patients' health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements., (© 2021. The Author(s).)

Background: Guidelines recommend that non-steroidal anti-inflammatory drugs (NSAIDs) be avoided in kidney transplant recipients due to potential nephrotoxicity. It is unclear whether physicians are following these recommendations., Methods: We conducted a retrospective cohort study of adult kidney transplant recipients from 2008 to 2017 in Alberta, Canada. We determined the frequency and prescriber of NSAID prescriptions, the proportion with serum creatinine and potassium testing post-fill, and the incidence of acute kidney injury (AKI, serum creatinine increase of ≥ 50% or ≥ 26.5 μmol/L from baseline) and hyperkalemia (potassium ≥ 5.5 mmol/L) within 14 and 30 days., Results: Of the 1730 kidney transplant recipients, 189 (11%) had at least one NSAID prescription over a median follow-up of 5 years (IQR 2-9) (280 unique prescriptions). The majority were prescribed by family physicians (67%). Approximately 25% and 50% of prescriptions had serum creatinine and potassium testing within 14 and 30 days, respectively. Of those with lab measurements within 14 days, 13% of prescriptions were associated with AKI and 5% had hyperkalemia., Conclusions: Contrary to guidelines, one in 10 kidney transplant recipients are prescribed an NSAID, and most do not get follow-up testing of graft function and hyperkalemia. These findings call for improved education of patients and primary care providers., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background: Patient videos about advance care planning (ACP; hereafter "Videos"), were developed to support uptake of provincial policy and address the complexity of patients' decision-making process. We evaluate self-administered ACP Videos, compare the studies' choice of outcomes, show correlations between the patients' ACP actions, and discuss implications for health care policy., Objective: To test the efficacy of the Videos on patients' ACP/goals of care designation conversations with a health care provider., Design, Setting, and Participants: Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle., Interventions: Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care., Main Outcomes and Measures: The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions., Results: We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; P = 0.032). Adjusted for the quality of conversations, there was no significant difference., Conclusions: Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.

Rationale & Objective: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe., Study Design: A cross-sectional survey., Setting & Participants: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018., Outcomes: PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures., Analytical Approach: Descriptive statistics., Results: Responses were received from 88% (n=160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n=156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for≤10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes., Limitations: Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data., Conclusions: Large inter- and intraregional disparities exist in PD availability, accessibility, affordability, delivery, and reporting of quality outcome measures around the world, with the greatest gaps observed in Africa and South Asia., (Crown Copyright © 2020. Published by Elsevier Inc. All rights reserved.)

Rationale & Objective: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide., Study Design: A cross-sectional survey., Setting & Participants: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018., Outcomes: Use, availability, accessibility, affordability, and quality of HD care., Analytical Approach: Descriptive statistics., Results: Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries., Limitations: A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis., Conclusions: In summary, findings reveal substantial variations in global HD use, availability, accessibility, quality, and affordability worldwide, with the lowest use evident in low- and lower-middle-income countries., (Crown Copyright © 2020. Published by Elsevier Inc. All rights reserved.)

Background: Chronic pain is a common and distressing symptom reported by patients with chronic kidney disease (CKD). Clinical practice and research in this area do not appear to be advancing sufficiently to address the issue of chronic pain management in patients with CKD., Objectives: To determine the prevalence and severity of chronic pain in patients with CKD., Design: Systematic review and meta-analysis., Setting: Interventional and observational studies presenting data from 2000 or later. Exclusion criteria included acute kidney injury or studies that limited the study population to a specific cause, symptom, and/or comorbidity., Patients: Adults with glomerular filtration rate (GFR) category 3 to 5 CKD including dialysis patients and those managed conservatively without dialysis., Measurements: Data extracted included title, first author, design, country, year of data collection, publication year, mean age, stage of CKD, prevalence of pain, and severity of pain., Methods: Databases searched included MEDLINE, CINAHL, EMBASE, and Cochrane Library, last searched on February 3, 2020. Two reviewers independently screened all titles and abstracts, assessed potentially relevant articles, and extracted data. We estimated pooled prevalence of overall chronic pain, musculoskeletal pain, bone/joint pain, muscle pain/soreness, and neuropathic pain and the I 2 statistic was computed to measure heterogeneity. Random effects models were used to account for variations in study design and sample populations and a double arcsine transformation was used in the model calculations to account for potential overweighting of studies reporting either very high or very low prevalence measurements. Pain severity scores were calibrated to a score out of 10, to compare across studies. Weighted mean severity scores and 95% confidence intervals were reported., Results: Sixty-eight studies representing 16 558 patients from 26 countries were included. The mean prevalence of chronic pain in hemodialysis patients was 60.5%, and the mean prevalence of moderate or severe pain was 43.6%. Although limited, pain prevalence data for peritoneal dialysis patients (35.9%), those managed conservatively without dialysis (59.8%), those following withdrawal of dialysis (39.2%), and patients with earlier GFR category of CKD (61.2%) suggest similarly high prevalence rates., Limitations: Studies lacked a consistent approach to defining the chronicity and nature of pain. There was also variability in the measures used to determine pain severity, limiting the ability to compare findings across populations. Furthermore, most studies reported mean severity scores for the entire cohort, rather than reporting the prevalence (numerator and denominator) for each of the pain severity categories (mild, moderate, and severe). Mean severity scores for a population do not allow for "responder analyses" nor allow for an understanding of clinically relevant pain., Conclusions: Chronic pain is common and often severe across diverse CKD populations providing a strong imperative to establish chronic pain management as a clinical and research priority. Future research needs to move toward a better understanding of the determinants of chronic pain and to evaluating the effectiveness of pain management strategies with particular attention to the patient outcomes such as overall symptom burden, physical function, and quality of life. The current variability in the outcome measures used to assess pain limits the ability to pool data or make comparisons among studies, which will hinder future evaluations of the efficacy and effectiveness of treatments. Recommendations for measuring and reporting pain in future CKD studies are provided., Trial Registration: PROSPERO Registration number CRD42020166965., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2021.)

Context: The efficacy and safety of cannabinoids to treat symptoms in individuals with kidney disease is uncertain., Objectives: We sought to elicit Canadian nephrologists' views regarding the use and study of cannabinoids in patients with kidney disease in an Internet-based survey of Canadian of Society of Nephrology members treating adult patients with kidney disease including dialysis., Methods: The degree to which respondents supported the use or study of cannabinoids for symptoms common in kidney disease was assessed using a modified Likert scale ranging from 1 to 7 (anchored at 1-definitely would not and 7-being definitely would). Participants were asked their degree of support for cannabinoid use in clinical practice and for randomized controlled trials examining cannabinoids for anxiety, depression, restless legs syndrome, itchiness, fatigue, chronic pain, decreased appetite, nausea/vomiting, sleep disorder, and others. Multilevel multivariable linear regression was used to identify independent predictors of the degree of support., Results: There were 151 (43.4%) responses from 348 eligible participants. One hundred twenty-four (82%) previously cared for patients using prescribed cannabinoids by other providers, and 29 (19%) had previously prescribed cannabinoids themselves. One hundred thirty-seven (91%) had previously cared for patients using nonprescription cannabinoids, which were used most commonly recreationally (88.3%), for chronic pain (73.7%) or for anxiety (52.6%). Respondents supported the use of cannabinoids (mean score >5) for each symptom in the setting of refractory symptoms. Similarly, respondents supported enrolling patients for trials for all symptoms (mean scores >5)., Conclusion: Nephrologists broadly support the use and study of cannabinoids for symptoms in patients with kidney disease., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: People with kidney failure typically receive KRT in the form of dialysis or transplantation. However, studies have suggested that not all patients with kidney failure are best suited for KRT. Additionally, KRT is costly and not always accessible in resource-restricted settings. Conservative kidney management is an alternate kidney failure therapy that focuses on symptom management, psychologic health, spiritual care, and family and social support. Despite the importance of conservative kidney management in kidney failure care, several barriers exist that affect its uptake and quality., Design, Setting, Participants, & Measurements: The Global Kidney Health Atlas is an ongoing initiative of the International Society of Nephrology that aims to monitor and evaluate the status of global kidney care worldwide. This study reports on findings from the 2018 Global Kidney Health Atlas survey, specifically addressing the availability, accessibility, and quality of conservative kidney management., Results: Respondents from 160 countries completed the survey, and 154 answered questions pertaining to conservative kidney management. Of these, 124 (81%) stated that conservative kidney management was available. Accessibility was low worldwide, particularly in low-income countries. Less than half of countries utilized multidisciplinary teams (46%); utilized shared decision making (32%); or provided psychologic, cultural, or spiritual support (36%). One-quarter provided relevant health care providers with training on conservative kidney management delivery., Conclusions: Overall, conservative kidney management is available in most countries; however, it is not optimally accessible or of the highest quality., (Copyright © 2021 by the American Society of Nephrology.)

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 [SONG-HD 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., (Copyright © 2020 by the American Society of Nephrology.)

Purpose: To collate best practice recommendations on the management of patients receiving in-center hemodialysis during the COVID-19 pandemic, based on published reports and current public health advice, while considering ethical principles and the unique circumstances of Canadian hemodialysis units across the country., Sources of Information: The workgroup members used Internet search engines to retrieve documents from provincial and local hemodialysis programs; provincial public health agencies; the Centers for Disease Control and Prevention; webinars and slides from other kidney agencies; and nonreviewed preprints. PubMed was used to search for peer-reviewed published articles. Informal input was sought from knowledge users during a webinar., Methods: Challenges in the care of hemodialysis patients during the COVID-19 pandemic were highlighted within the Canadian Senior Renal Leaders Forum discussion group. The Canadian Society of Nephrology (CSN) developed the COVID-19 rapid response team (RRT) to address these challenges. They identified a pan-Canadian team of clinicians and administrators with expertise in hemodialysis to form the workgroup. One lead was chosen who drafted the initial document. Members of the workgroup reviewed and discussed all recommendations in detail during 2 virtual meetings on April 7 and April 9. Disagreements were resolved by consensus. The document was reviewed by the CSN COVID-19 RRT, an ethicist, an infection control expert, a community nephrologist, and a patient partner. Content was presented during an interactive webinar on April 11, 2020 attended by 269 kidney health professionals, and the webinar and first draft of the document were posted online. Final revisions were made based on feedback received until April 13, 2020. CJKHD editors reviewed the parallel process peer review and edited the manuscript for clarity., Key Findings: Recommendations were made under the following themes: (1) Identification of patients with COVID-19 in the dialysis unit, (2) hemodialysis of patients with confirmed COVID-19, (3) hemodialysis of patients not yet known to have COVID-19, (4) visitors; (5) testing for COVID-19 in the dialysis unit; (6) resuscitation, (6) routine hemodialysis care, (7) hemodialysis care under fixed dialysis resources., Limitations: Because of limitations of time and resources, and the large number of questions, formal systematic review was not undertaken. The recommendations are based on expert opinion and subject to bias. The parallel review process that was created may not be as robust as the standard peer review process., Implications: We hope that these recommendations provide guidance for dialysis unit directors, clinicians, and administrators on how to limit risk from infection and adverse outcomes, while providing necessary dialysis care in a setting of finite resources. We also identify a number of resource allocation priorities, which we hope will inform decisions at provincial funding agencies., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2020.)

Abstract: Pain is a severe and common symptom in patients receiving dialysis but remains inadequately managed in clinical practice. Understanding patient experiences of pain can inform strategies to address this patient-important symptom. We aimed to describe patients' perspectives on causes, experiences, and impacts of dialysis-associated pain. MEDLINE, Embase, PsycINFO, and CINAHL were searched to August 2019 for all qualitative studies that described the perspectives of pain in adults aged 18 years or older receiving dialysis. Findings from the primary studies were analyzed using thematic synthesis. We included 60 studies across 14 countries involving 1343 participants (1215 receiving hemodialysis and 128 receiving peritoneal dialysis), and identified 6 themes: gripped by an all-consuming agony (draining cognitive capacity, exacerbating other symptoms); suffering in silence (surrendering to the inevitable, ignored or dismissed, hiding symptoms to protect others); provoking fear of treatment (resistance to cannulation, avoiding dialysis, anxious from witnessing other patients in pain); preventing life participation (preventing fulfilment of valued roles, depleting the will to live); coping aided by connection with others (shared understanding among patients, comforted and supported by others); and developing awareness, assertiveness, and self-reliance (procedural vigilance, finding strategies to minimize pain, bodily understanding and knowing thresholds, positive thinking). Struggling with pain in dialysis involved a progression of agony, fear, avoidance, and despair. However, support from others and self-management strategies were used to cope with pain. Strategies to empower patients to report and minimize pain and its consequences in dialysis are needed., (Copyright © 2020 International Association for the Study of Pain.)

Background: Kidney failure requiring dialysis is associated with poor health outcomes and health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) capture symptom burden, level of functioning and other outcomes from a patient perspective, and can support clinicians to monitor disease progression, address symptoms, and facilitate patient-centered care. While evidence suggests the use of PROMs in clinical practice can lead to improved patient experience in some settings, the impact on patients' health outcomes and experiences is not fully understood, and their cost-effectiveness in clinical settings is unknown. This study aims to fill these gaps by evaluating the effectiveness and cost-effectiveness of routinely measuring PROMs on patient-reported experience, clinical outcomes, HRQL, and healthcare utilization., Methods: The EMPATHY trial is a pragmatic multi-centre cluster randomized controlled trial that will implement and evaluate the use of disease-specific and generic PROMs in three kidney care programs in Canada. In-centre hemodialysis units will be randomized into four groups, whereby patients: 1) complete a disease-specific PROM; 2) complete a generic PROM; 3) complete both types of PROMs; 4) receive usual care and do not complete any PROMs. While clinical care pathways are available to all hemodialysis units in the study, for the three active intervention groups, the results of the PROMs will be linked to treatment aids for clinicians and patients. The primary outcome of this study is patient-provider communication, assessed by the Communication Assessment Tool (CAT). Secondary outcomes include patient management and symptoms, use of healthcare services, and the costs of implementing this intervention will also be estimated. The present protocol fulfilled the Standard Protocol Items: Recommendations for Intervention Trials (SPIRIT) checklist., Discussion: While using PROMs in clinical practice is supported by theory and rationale, and may engage patients and enhance their role in decisions regarding their care and outcomes, the best approach of their use is still uncertain. It is important to rigorously evaluate such interventions and investments to ensure they provide value for patients and health systems., Trial Registration: Protocol version (1.0) and trial registration data are available on www.clinicaltrials.gov , identifier: NCT03535922 , registered May 24, 2018.

Context: Previous studies from the U.S. and Canada report deficiencies in informed decision making and a need to improve end-of-life (EoL) care in patients undergoing dialysis. However, there is a paucity of literature on these issues in Pakistani dialysis patients, who differ from Western patients in culture, religion, and available health care services., Objectives: To study informed dialysis decision-making and EoL attitudes and beliefs in Pakistani patients receiving dialysis., Methods: We used convenience sampling to collect 522 surveys (90% response rate) from patients in seven different dialysis units in Pakistan. We used an existing dialysis survey tool, translated into Urdu, and backtranslated to English. A facilitator distributed the survey, explained questions, and orally administered it to patients unable to read., Results: Less than one-fourth of the respondents (23%) felt informed about their medical condition, and 45% were hopeful that their condition would improve in the future. More than half (54%) wished to know their prognosis, and 80% reported having no prognostic discussion. Almost 63% deemed EoL planning important, but only 5% recalled discussing EoL decisions with a doctor during the last 12 months. Nearly 62% of the patients regretted their decision to start dialysis. Patients' self-reported knowledge of hospice (5%) and palliative care (7.9%) services was very limited, yet 46% preferred a treatment plan focused on comfort and symptom management rather than life extension., Conclusion: Pakistani patients reported a need for better informed dialysis decision making and EoL care and better access to palliative care services. These findings underscore the need for palliative care training of Pakistani physicians and in other developing countries to help address communication and EoL needs of their dialysis patients., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Pain is common in patients with chronic kidney disease (CKD). Analgesics may be appropriate for some CKD patients., Objectives: To determine the prevalence of overall analgesic use and the use of different types of analgesics including acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), adjuvants, and opioids in patients with CKD., Design: Systematic review and meta-analysis., Setting: Interventional and observational studies presenting data from 2000 or later. Exclusion criteria included acute kidney injury or studies that limited the study population to a specific cause, symptom, and/or comorbidity., Patients: Adults with stage 3-5 CKD including dialysis patients and those managed conservatively without dialysis., Measurements: Data extracted included title, first author, design, country, year of data collection, publication year, mean age, stage of CKD, prevalence of analgesic use, and the types of analgesics prescribed., Methods: Databases searched included MEDLINE, CINAHL, EMBASE, and Cochrane Library. Two reviewers independently screened all titles and abstracts, assessed potentially relevant articles, and extracted data. We estimated pooled prevalence of analgesic use and the I 2 statistic was computed to measure heterogeneity. Random-effects models were used to account for variations in study design and sample populations, and a double arcsine transformation of the prevalence variables was used to accommodate potential overweighting of studies with very large or very small prevalence measurements. Sensitivity analyses were performed to determine the magnitude of publication bias and assess possible sources of heterogeneity., Results: Forty studies were included in the analysis. The prevalence of overall analgesic use in the random-effects model was 50.8%. The prevalence of acetaminophen, NSAIDs, and adjuvant use was 27.5%, 17.2%, and 23.4%, respectively, while the prevalence of opioid use was 23.8%. Due to the possibility of publication bias, the actual prevalence of acetaminophen use in patients with advanced CKD may be substantially lower than this meta-analysis indicates. A trim-and-fill analysis decreased the pooled prevalence estimate of acetaminophen use to 5.4%. The prevalence rate for opioid use was highly influenced by 2 large US studies. When these were removed, the estimated prevalence decreased to 17.3%., Limitations: There was a lack of detailed information regarding the analgesic regimen (such as specific analgesics used within each class and inconsistent accounting for patients on multiple drugs and the use of over-the-counter analgesics such as acetaminophen and NSAIDs), patient characteristics, type of pain being treated, and the outcomes of treatment. Data on adjuvant use were very limited. These results, therefore, must be interpreted with caution., Conclusions: There was tremendous variability in the prescribing patterns of both nonopioid and opioid analgesics within and between countries suggesting widespread uncertainty about the optimal pharmacological approach to treating pain. Further research that incorporates robust reporting of analgesic regimens and links prescribing patterns to clinical outcomes is needed to guide optimal clinical practice., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2020.)

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., Results: In total, 169 patients/caregivers and 336 health professionals from 60 countries completed the survey. Both groups (patients/caregivers and health professionals) rated life participation (7.55), tiredness (7.40), level of energy (7.37), ability to think clearly (7.15), post-dialysis fatigue (7.13), motivation (7.03) and ability to concentrate (7.03) as critically important (mean Likert score greater than 7) content dimensions to include in a core outcome measure. Compared to patients and caregivers, health professionals rated post-dialysis fatigue, memory and verbal abilities more highly. Based on the relative importance scores, life participation was ranked most highly above all content dimensions. Severity was rated and ranked the most important measurement dimension by all stakeholders., Conclusion: A core outcome measure of fatigue should assess impact of fatigue on life participation, tiredness and level of energy, using a severity scale. A consistent and valid measurement of fatigue will improve the value of trials in supporting decision-making based on this important outcome., (© 2019 Asian Pacific Society of Nephrology.)

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., Results: 65 studies involving 1,713 participants undergoing hemodialysis were included. We identified 4 themes related to fatigue: debilitating and exhausting burden of dialysis (bodily depletion, trapped in a vicious cycle of postdialysis exhaustion, vigilance and worry inhibiting rest, tiresome and agonizing regimen, and without remedy and relief), restricted life participation (deprived of time, managing energy reserves, frustrating need to rest, and joys foregone), diminishing capacities to fulfil relationship roles (losing ability to work and provide for family, failing as a parent, lacking stamina for sexual intimacy, and relying on others), and vulnerable to misunderstanding (being criticized for the need to rest and failing to meet expectations)., Limitations: Non-English articles were excluded and most studies were conducted in high-income countries., Conclusions: For patients undergoing hemodialysis who experience fatigue, fatigue is a profound and relentless exhaustion that pervades the entire body and encompasses weakness. The fatigue drains vitality in patients and constrains their ability to do usual activities and fulfill their roles and meet personal aspirations. Explicit recognition of the impact of fatigue and establishing additional effective interventions to improve fatigue are needed., (Copyright © 2019 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Pain is common and poorly managed in patients with advanced CKD, likely due to both under and over prescription of appropriate analgesics. Poorly managed pain contributes to patients' poor quality of life and excessive health care use. There is tremendous variability within and between countries in prescribing patterns of analgesics, suggesting that factors other than patient characteristics account for these differences. This article discusses the pharmacologic management of acute and chronic pain in patients with advanced CKD, and the role analgesics, including opioids, play in the overall approach to pain management., (Copyright © 2019 by the American Society of Nephrology.)

Background: Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area., Materials and Methods: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues., Results: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist., Conclusion: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions.
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Conservative kidney management is increasingly accepted as an appropriate treatment option for patients with eGFR category 5 CKD who are unlikely to benefit from dialysis and/or who choose a nondialysis care option. However, there remains great variation in the delivery of their care. As part of the development of a conservative kidney management pathway that is undergoing evaluation, a set of recommendations specific to conservative kidney management for managing the complications of CKD and common symptoms was developed. These recommendations focus on the patient's values and preferences and aim to optimize comfort and quality of life. Explanations for the interventions are provided to support the shared decision-making process between health care professionals, patients, and family members. The recommendations generally emphasize the preservation of function (cognitive, physical, and kidney) and address symptom burden, acknowledging that management priorities can change over time. The recommendations should be used in conjunction with other key elements of conservative kidney management, including clear communication and shared decision making for choosing conservative kidney management, advance care planning, and psychosocial support. Although there are limitations to the existing evidence specific to conservative kidney management, these recommendations are intended as a starting point toward reaching consensus and generating further evidence., (Copyright © 2019 by the American Society of Nephrology.)

Context: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers., Objectives: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life., Methods: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale., Results: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued., Conclusion: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: The inflammation-driven increase in peritoneal solute transport rate that occurs during long-term peritoneal dialysis is associated with higher mortality, hospitalization, and encapsulating peritoneal sclerosis. Because biocompatible solutions were developed to mitigate these effects, we examined the association with their use and longitudinal peritoneal solute transport rate., Design, Setting, Participants, & Measurements: We analyzed subjects from the multinational prospective Global Fluid Study with three or more peritoneal solute transport rate measurements >2 months from the start of peritoneal dialysis. Follow-up was for 7.5 years (median, 2.3 years; interquartile range, 1.8-3.6) in biocompatible solutions and 12.8 years (median, 3.2 years; interquartile range, 1.9-4.3) for standard solutions. Using a random intercept/slopes multilevel model, we examined the association of patients using biocompatible solutions and peritoneal solute transport rate over time, adjusting for center effects, dialysate dextrose concentration, baseline dialysate IL-6 concentration, icodextrin use, residual kidney function, and peritonitis., Results: Of 366 patients, the 71 receiving biocompatible solutions throughout their time on peritoneal dialysis had a mean adjusted dialysate-to-plasma creatinine ratio of 0.67 compared with 0.72 for standard solutions ( P =0.02). With duration of treatment, there was a continuous increase in peritoneal solute transport rate in patients using standard solutions (range, 2 months to 4 years). In contrast, patients using biocompatible solutions had peritoneal solute transport rates that plateaued after 2 years of therapy. These changes in peritoneal solute transport rate were independent of baseline inflammation and time-varying predictors of faster peritoneal solute transport rate. In patients suffering episodes of peritonitis while using standard solutions, there was an associated increase in peritoneal solute transport rate of 0.020 (95% confidence interval, 0.01 to 0.03) per episode, whereas in patients using biocompatible solutions, there was no change in this parameter (-0.014; 95% confidence interval, -0.03 to <0.01)., Conclusions: These data suggest that a different temporal pattern in changes in peritoneal solute transport rate occurs during the course of peritoneal dialysis according to solution type and that patients using biocompatible solutions may avoid the increase in solute transport associated with peritonitis., (Copyright © 2018 by the American Society of Nephrology.)

Background: Many patients who receive chronic hemodialysis have a limited life expectancy comparable to that of patients with metastatic cancer. However, patterns of home palliative care use among patients receiving hemodialysis are unknown., Objectives: We aimed to undertake a current-state analysis to inform measurement and quality improvement in palliative service use in Ontario., Methods: We conducted a descriptive study of outcomes and home palliative care use by Ontario residents maintained on chronic dialysis using multiple provincial healthcare datasets. The period of study was the final year of life, for those died between January 2010 and December 2014., Results: We identified 9611 patients meeting inclusion criteria. At death, patients were (median [Q1, Q3] or %): 75 (66, 82) years old, on dialysis for 3.0 (1.0-6.0) years, 41% were women, 65% had diabetes, 29.6% had dementia, and 13.9% had high-impact neoplasms, and 19.9% had discontinued dialysis within 30 days of death. During the last year of life, 13.1% received ⩾1 home palliative services. Compared with patients who had no palliative services, those who received home palliative care visits had fewer emergency department and intensive care unit visits in the last 30 days of life, more deaths at home (17.1 vs 1.4%), and a lower frequency of deaths with an associated intensive care unit stay (8.1 vs 37.8%)., Conclusions: Only a small proportion of patients receiving dialysis in Ontario received support through the home palliative care system. There appears to be an opportunity to improve palliative care support in parallel with dialysis care, which may improve patient, family, and health-system outcomes., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Kidney supportive care requires a highly personalized approach to care. Precision medicine holds promise for a deeper understanding of the pathophysiology of symptoms and related syndromes and more precise individualization of prognosis and treatment estimates, therefore providing valuable opportunities for greater personalization of supportive care. However, the major drivers of quality of life are psychosocial, economic, lifestyle, and preference-based, and consideration of these factors and skilled communication are integral to the provision of excellent and personalized kidney supportive care. This article discusses the concepts of personalized and precision medicine in the context of kidney supportive care and highlights some opportunities and limitations within these fields., (Copyright © 2018 Elsevier Inc. All rights reserved.)

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., Results: From 123 studies, we identified 43 different measures: 24 (55%) were developed specifically for the hemodialysis population (of which 18 were nonvalidated author-developed measures for use in their study only), 17 (40%) for other populations, and 2 (5%) for chronic kidney disease (all stages). The measures assessed 11 content dimensions of fatigue, the 3 most frequent being level of energy (19 [44%]), tiredness (15 [35%]), and life participation (14 [33%]); and 4 measurement dimensions: severity (34 [79%]), frequency (10 [23%]), duration (4 [9%]), and change (1 [2%]). The vitality subscale of the 36-Item Short Form Health Survey (SF-36) was the most frequently used (19 [15%] studies), but has only been tested for reliability in hemodialysis. Of the fatigue-specific measures, the Chalder Fatigue Scale was the only one evaluated in hemodialysis, but the full psychometric robustness remains uncertain., Limitations: For feasibility, we searched for validation studies in the hemodialysis population using the names of measures identified in the primary search strategy., Conclusions: A very wide range of measures have been used to assess fatigue in patients receiving hemodialysis, each varying in content and length. Many have limited validation data available in this population. A standardized and psychometrically robust measure that captures dimensions of fatigue that are important to patients is needed to estimate and improve this disabling complication of hemodialysis., (Copyright © 2017 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)