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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. Graphical abstract A higher resolution version of the Graphical abstract is available as Supplementary information Supplementary Information The online version contains supplementary material available at 10.1007/s00467-021-05269-4.

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.

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.

Background Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas. Methods As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT). Results Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups. Conclusions These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.

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.

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.

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.

Author(s): Yeung, Emily; Bello, AK; Levin, Adeera; Lunney, Meaghan; Osman, Mohamed A; Ye, Feng; Ashuntantang, Gloria; Bellorin-Font, Ezequiel; Benghanem Gharbi, Mohammed; Davison, Sara; Ghnaimat, Mohammad; Harden, Paul; Jha, Vivekanand; Kalantar-Zadeh, Kamyar; Kerr, Peter; Klarenbach, Scott; Kovesdy, Csaba; Luyckx, Valerie; Neuen, Brendon; O'Donoghue, Donal; Ossareh, Shahrzad; Perl, Jeffrey; Ur Rashid, Harun; Rondeau, Eric; See, Emily; Saad, Syed; Sola, Laura; Tchokhonelidze, Irma; Tesar, Vladimir; Tungsanga, Kriang; Turan Kazancioglu, Rumeyza; Wang, Angela Yee-Moon; Wiebe, Natasha; Yang, Chih-Wei; Zemchenkov, Alexander; Zhao, Minhui; Jager, Kitty J; Caskey, Fergus; Perkovic, Vlado; Jindal, Kailash; Okpechi, Ikechi G; Tonelli, Marcello; Feehally, John; Harris, David Ch; Johnson, David | Abstract: ObjectivesThe Global Kidney Health Atlas (GKHA) is a multinational, cross-sectional survey designed to assess the current capacity for kidney care across all world regions. The 2017 GKHA involved 125 countries and identified significant gaps in oversight, funding and infrastructure to support care for patients with kidney disease, especially in lower-middle-income countries. Here, we report results from the survey for the second iteration of the GKHA conducted in 2018, which included specific questions about health financing and oversight of end-stage kidney disease (ESKD) care worldwide.SettingA cross-sectional global survey.ParticipantsKey stakeholders from 182 countries were invited to participate. Of those, stakeholders from 160 countries participated and were included.Primary outcomesPrimary outcomes included cost of kidney replacement therapy (KRT), funding for dialysis and transplantation, funding for conservative kidney management, extent of universal health coverage, out-of-pocket costs for KRT, within-country variability in ESKD care delivery and oversight systems for ESKD care. Outcomes were determined from a combination of desk research and input from key stakeholders in participating countries.Results160 countries (covering 98% of the world's population) responded to the survey. Economic factors were identified as the top barrier to optimal ESKD care in 99 countries (64%). Full public funding for KRT was more common than for conservative kidney management (43% vs 28%). Among countries that provided at least some public coverage for KRT, 75% covered all citizens. Within-country variation in ESKD care delivery was reported in 40% of countries. Oversight of ESKD care was present in all high-income countries but was absent in 13% of low-income, 3% of lower-middle-income, and 10% of upper-middle-income countries.ConclusionSignificant gaps and variability exist in the public funding and oversight of ESKD care in many countries, particularly for those in low-income and lower-middle-income countries.

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.

Background and Aims Fluid overload and vascular stiffness are two independent predictors of cardiovascular events in hemodialysis (HD) patients. To date, observational and interventional studies that investigated the effect of inter- and intradialytic fluid overload changes on vascular stiffness in HD patients are very limited. We performed a scoping review to explore existing reports about effects of fluid overload on vascular stiffness in adults receiving HD treatment and to identify knowledge gaps for future research. Method We followed the framework originally developed by Arksey and O’Malley. We searched Medline, Embase, CINAHL, and Cochrane Database of systematic reviews from inception to October 29, 2019. References of review papers were screened for relevant studies not identified from the initial search until saturation is achieved. Results Of 666 eligible studies, nineteen studies met the inclusion criteria. These included clinical observational studies (n=16) and randomized controlled trials (n=3). In general, most of the identified studies had small sample size and short term of follow up. Studies use different definitions of fluid overload and vascular stiffness. Measures of relative fluid overload like the ratio of extracellular fluid/intracellular fluid, fluid overload/extracellular fluid, and/or extracellular fluid/total body fluid were used as a representative of fluid status. Pulse wave velocity and augmentation index were used interchangeably as vascular stiffness measures. The accumulated findings were inconsistent and inconclusive. There was no consensus whether intradialytic fluid volume changes affected vascular stiffness. In the majority of the observational studies, a decrease in pulse wave velocity or augmentation index correlated with a decrease in blood pressure after fluid correction by HD treatment. The randomized clinical trials used different methods and technologies for the correction of fluid overload, thereby, results were conflicting. Conclusion Current literature is insufficient to justify whether fluid overload changes have a direct effect on vascular stiffness in HD patients. The findings were conflicting which limits the comparisons of studies and generalization of findings. These knowledge gaps urge the need for further clinical studies to enhance the understanding and to improve the quality of research in this topic. This includes standardized definitions and methodologies as well as longer term of follow up.

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.To determine the prevalence and severity of chronic pain in patients with CKD.Systematic review and meta-analysis.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.Adults with glomerular filtration rate (GFR) category 3 to 5 CKD including dialysis patients and those managed conservatively without dialysis.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.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 theSixty-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.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.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.PROSPERO Registration number CRD42020166965.La douleur chronique est un symptôme affligeant fréquemment rapporté par les patients atteints d’insuffisance rénale chronique (IRC). Pourtant, la recherche et la pratique clinique dans ce domaine ne semblent pas progresser suffisamment pour aborder sa gestion dans cette population.Déterminer la prévalence et l’intensité de la douleur chronique chez les patients atteints d’IRC.Revue systématique et méta-analyse.Les études observationnelles et interventionnelles présentant des données depuis l’an 2000. Ont été exclus les cas d’insuffisance rénale aigüe et les études portant sur une population ayant une cause, un symptôme ou une maladie concomitante en particulier.Des adultes atteints d’IRC de stade 3 à 5, y compris des patients dialysés et des patients non dialysés pris en charge de façon conservatrice.Les données extraites comprenaient le titre de l’article, le nom de l’auteur principal, le type d’étude, le pays où s’est tenue l’étude, l’année de collection des données, l’année de publication, l’âge médian des sujets, le stade de l’IRC, la prévalence de la douleur et son intensité.Les données ont été colligées dans MEDLINE, CINAHL, EMBASE et la bibliothèque Cochrane. La dernière consultation date du 3 février 2020. Deux examinateurs ont, de façon indépendante, trié les titres et les abrégés, évalué les articles potentiellement pertinents et extrait les données. La prévalence combinée de la douleur chronique globale, de la douleur musculo-squelettique, de la douleur osseuse/articulaire, de la douleur musculaire et de la douleur neuropathique a été évaluée, et le calcul de la statistiqueSoixante-huit études ont été incluses, lesquelles portaient sur un total de 16 558 patients dans 26 pays. La prévalence moyenne de la douleur chronique chez les patients hémodialysés était de 60,5 %; la prévalence moyenne de la douleur modérée ou sévère était de 43,6 %. Quoique limitées, les données portant sur des patients sous dialyse péritonéale (35,9 %), des patients suivant des traitements conservateurs sans dialyse (59,8 %), des patients ayant arrêté la dialyse (39,2 %) ou des patients atteints d’un stade inférieur d’IRC (61,2 %) suggèrent une prévalence tout aussi élevée.Les études incluses manquaient de cohérence dans leur approche pour définir la chronicité et la nature de la douleur. Les mesures utilisées pour déterminer l’intensité de la douleur étaient variables, ce qui a limité la comparaison des résultats entre les populations. La plupart des études indiquaient des scores moyens d’intensité pour l’ensemble de la cohorte plutôt que la prévalence (numérateur et dénominateur) de chacune des catégories d’intensité (légère, modérée et sévère). Les scores moyens d’intensité pour une population ne permettent pas « les analyses de répondants » et la compréhension de la douleur cliniquement pertinente.La douleur chronique est fréquente et souvent intense dans les diverses populations de patients atteints d’IRC, ce qui confirme la gestion de la douleur chronique comme priorité clinique et de recherche. Les recherches futures devraient permettre une meilleure compréhension des déterminants de la douleur chronique et évaluer l’efficacité des stratégies de gestion de la douleur en accordant une attention particulière aux résultats des patients, notamment au fardeau global des symptômes, à la fonction physique et à la qualité de vie. La capacité de regrouper des données ou de faire des comparaisons entre les études est limitée par la variabilité actuelle des mesures utilisées pour évaluer la douleur, ce qui entravera les futures évaluations de l’efficacité des traitements. Des recommandations pour mesurer et signaler la douleur dans les futures études sur l’IRC sont fournies.

Background: People with kidney failure typically receive kidney replacement therapy (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, which focuses on symptom management, psychological health, spiritual care and family and social support. Despite the importance of conservative kidney management in kidney failure care, several barriers exist that impact its uptake and quality. Methods: The Global Kidney Health Atlas is an ongoing initiative of the International Society of Nephrology (ISN), which 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, uptake 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%), shared decision-making (32%), or provided psychological, cultural, or spiritual support (36%). One quarter provided relevant healthcare 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.

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.

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.

Patients with chronic kidney disease suffer from high rates of pain. Pain is a highly complex, multidimensional, and personal phenomenon with far reaching physical and psychosocial consequences if the pain progresses to become a chronic disorder. Systematic integration of global symptom screening needs to be incorporated into routine kidney care, followed by a comprehensive pain assessment for those with clinically significant pain, keeping in mind the overall goal is to promote functionality and quality of life and not to necessarily completely resolve the pain. There is tremendous variability within and between countries in the management of pain, including the prescribing patterns of analgesics. This chapter outlines a systematic approach to the assessment and management of acute and chronic pain with both nonpharmacologic and pharmacologic interventions.

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.

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.

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.

Purpose of program: This paper will provide guidance on how to best manage patients with end-stage kidney disease who will be or are being treated with home dialysis during the COVID-19 pandemic. Sources of information: Program-specific documents, pre-existing, and related to COVID-19; documents from national and international kidney agencies; national and international webinars, including webinars that we hosted for input and feedback; with additional information from formal and informal review of published academic literature. Methods: Members of the Canadian Society of Nephrology (CSN) Board of Directors solicited a team of clinicians and administrators with expertise in home dialysis. Specific COVID-19-related themes in home dialysis were determined by the Canadian senior renal leaders community of practice, a group compromising medical and administrative leaders of provincial and health authority renal programs. We then developed consensus-based recommendations virtually by the CSN work-group with input from ethicists with nephrology training. The recommendations were further reviewed by community nephrologists and over a CSN-sponsored webinar, attended by 225 kidney health care professionals, for further peer input. The final consensus recommendations also incorporated review by the editors at the Canadian Journal of Kidney Health and Disease (CJKHD). 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 provider and patient contact, and (7) assisted peritoneal dialysis in the community. We make specific suggestions and recommendations for each of these areas. Limitations: This suggestions and recommendations in this paper are expert opinion, and subject to the biases associated with this level of evidence. To expedite the publication of this work, a parallel review process was created that may not be as robust as standard arms’ length peer-review processes. Implications: These recommendations are intended to provide the best care possible during a time of altered priorities and reduced resources.

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.

Background and objectives\ud 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.\ud \ud Design, setting, participants, & measurements\ud 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.\ud \ud Results\ud 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

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.

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.

Objective: To describe the pharmacokinetics of hydromorphone (HM) and its primary metabolite hydromorphone- 3-glucuronide (H3G) both on and off dialysis in relation to the pharmacodynamic measurements of pain.Design: Prospective, open-label, observational study.Setting: Canadian, university-based renal program.Participants: Twelve anuric hemodialysis patients with chronic pain, established on immediate-release HM.Main Outcome Measures: HM and H3G plasma concentrations were measured during and between hemodialysis treatments using a reverse-phase highperformance liquid chromatography assay with liquid chromatography/mass spectrometer/mass spectrometer detection. The McGill Pain Questionnaire (MPQ) and a Visual Analogue Scale (VAS) were used to measure pain. Noncompartmental analyses were conducted. Adverse effects were recorded.Results: HM did not substantially accumulate (accumulation factor R = 2.7 (1.6)), most likely due to the rapid conversion to H3G. Conversely, H3G accumulated between dialysis treatments (R = 12.5 (12.1)) but appeared to be effectively removed during hemodialysis (1.8 (0.7), p = 0.03). HM resulted in >65 percent reduction in pain over dosing intervals. Mean MPQ pain scores decreased from 39.8 (18.2) to 12.3 (16.2) on dialysis and from 35.0 (18.5) to 15.5 (13.6) between dialysis treatments. Mean VAS pain scores decreased from 7.5 (2.5) to 3.0 (1.5) on dialysis and from 5.9 (3.2) to 4.4 (1.6) between dialysis treatments. No clinically significant opioid toxicity was observed. The accumulation of H3G between hemodialysis treatments was associated with greater sensory-type pain (r = 0.76, p < 0.0001) and reduced duration of analgesia.Conclusions: HM may be a safe and effective opioid for use in selected hemodialysis patients.

Patients reaching end-stage kidney disease face difficult decisions, including choosing among renal replacement therapies (RRTs). With an increasingly elderly and frail population, there is growing interest in conservative kidney management (CKM) as a viable alternative to dialysis. Shared decision-making (SDM) is a patient-centered approach to these decisions, in which choices are viewed within the explicitly discussed values and preferences of the patient. Patient decision aids (PDAs) are tools designed to facilitate these discussions. The choice between dialysis and CKM is particularly complex, given the poor prognostication data for CKM. This is an emerging area for PDAs in nephrology. This review highlights care gaps around SDM for dialysis versus CKM, presents current PDAs for making choices about RRTs and CKM and discusses exciting new work around the development of novel PDAs.Many PDAs have been created recently, primarily to help with decisions about RRTs. Three new PDAs are in testing phases to aid with the more complex decision of choosing between dialysis and CKM.International nephrology communities are moving toward improved SDM with their patients and PDAs are being developed to facilitate this process.

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.

Pain is common in patients with chronic kidney disease (CKD). Analgesics may be appropriate for some CKD patients.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.Systematic review and meta-analysis.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.Adults with stage 3-5 CKD including dialysis patients and those managed conservatively without dialysis.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.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 theForty 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%.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.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.La douleur est fréquente chez les patients atteints d’insuffisance rénale chronique (IRC). La prise d’analgésiques peut être nécessaire chez certains patients atteints d’IRC.Établir la prévalence globale de la prise d’analgésiques chez les patients atteints d’IRC puis de la consommation des différents types d’analgésiques (acétaminophène, anti-inflammatoires non stéroïdiens [AINS], adjuvants, opioïdes).Revue systématique et méta-analyse.Les études observationnelles et interventionnelles présentant des données depuis l’an 2000. Ont été exclus les cas d’insuffisance rénale aigüe et les études portant sur une population, une cause, un symptôme ou une comorbidité en particulier.Des adultes atteints d’IRC de stade 3 à 5, incluant des patients dialysés et des patients non dialysés pris en charge de façon conservatrice.Le titre de l’article, le nom de l’auteur principal, le type d’étude, le pays où s’est tenue l’étude, l’année de collection des données, l’année de publication, l’âge médian des sujets, le stade de l’IRC, la prévalence de la prise d’analgésiques et les types d’analgésiques prescrits.Les données ont été colligées dans MEDLINE, CINAHL, EMBASE et la bibliothèque Cochrane. Deux examinateurs ont trié les titres et les abrégés, évalué les articles potentiellement pertinents et extrait les données de façon indépendante. La prévalence combinée de la prise d’analgésiques a été évaluée et la statistiqueL’analyse porte sur un total de 40 études. Dans les modèles à effets aléatoires, la prévalence globale de prise d’analgésiques était de 50,8 %. Quant à la prévalence selon le type d’analgésique elle s’établissait à 27,5 % pour l’acétaminophène, à 17,2 % pour les AINS, à 23,4 % pour les adjuvants et à 23,8 % pour les opioïdes. Chez les patients atteints d’IRC de stade avancé, de possibles de biais de publication font en sorte que la prévalence réelle de l’acétaminophène pourrait s’avérer nettement inférieure à ce qu’indique cette méta-analyse. Une analyse par la méthode « trim and fill » a réduit à 5,4 % la prévalence groupée estimée pour la prise d’acétaminophène. Le taux de prévalence pour la prise d’opioïdes était fortement influencé par deux vastes études américaines; en les retirant de l’analyse, la prévalence estimée passait à 17,3 %.Ces résultats doivent être interprétés avec prudence puisque des informations détaillées manquaient sur le schéma posologique (analgésiques particuliers utilisés dans chaque classe, comptabilisation incohérente pour les patients prenant plusieurs médicaments, prise d’analgésiques en vente libre tels que l’acétaminophène et les AINS), les caractéristiques des patients, les types de douleurs traitées et les résultats des traitements. De plus, les données sur la prise d’adjuvants étaient très limitées.Une très grande variabilité a été observée dans les profils de prescription tant pour les analgésiques opioïdes que pour les non-opioïdes. Une variabilité qui s’observe aussi tant dans un même pays qu’entre les différents pays, ce qui suggère une incertitude généralisée quant à la meilleure approche pharmacologique dans le traitement de la douleur. D’autres recherches intégrant une description rigoureuse du schéma posologique et reliant les profils de prescription aux résultats cliniques sont nécessaires pour guider l’optimisation des pratiques cliniques.

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.

Background The ACCEPT survey (Audit of Communication, CarE Planning, and DocumenTation) evaluates the quality of Advance Care Planning (ACP) practice through patient-reported experience measures and ACP documentation audit. We evaluated practice three years post system-wide policy for ACP implementation and patient awareness of their “Goals of Care Designation” (GCD) medical order. Method Consecutive, consenting patients over 55 years with serious, chronic illness or age >80 years with any acute admission were prospectively enrolled from acute medical units in seven hospitals across Alberta, Canada. Research assistants administered the ACCEPT survey within 5 days of admission and reviewed participant charts for ACP and GCD documentation. Results Of 502 patients (mean age 81 years, 53% female) 93% had a GCD order in their chart but only 30% were aware of this. 33% reported having discussed none of the five key elements of goals of care conversations (patients’ values and beliefs, prognosis, patients’ fears and concerns, treatment preferences and prior ACP documentation or conversations) with a hospital clinician. Raw agreement between patients’ expressed preferences for EOL care and documentation in patient charts was 56% (concordance kappa=0.273). Multivariate regression analysis found that awareness of GCD order was associated with health region, patient frailty, quality of goals of care conversations in hospital and whether ACP conversations were considered important to the patient. Conclusions Despite a system-wide policy, we found evidence of serious concerns about the quality of ACP and GCD practice. Intentional quality improvement interventions are likely needed to enhance practice and achieve patient-centred care.

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.

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. .

Background and objectives Conservative management of adults with stage 5 CKD (eGFR Design, setting, participants, & measurements In 2015, we conducted a cross–sectional, population–based survey of all primary care physicians in Alberta, Canada. Eligible participants had experience caring for adults ages ≥75 years old with stage 5 CKD not planning on initiating dialysis. Questionnaire items were on the basis of a qualitative descriptive study informed by the Behavior Change Wheel and tested for face and content validity. Physicians were contacted via postal mail and/or fax on the basis of a modified Dillman method. Results Four hundred nine eligible primary care physicians completed the questionnaire (9.6% response rate). The majority of respondents were men (61.6%), were ages 40–60 years old (62.6%), and practiced in a large/medium population center (68.0%). The most common barrier to providing conservative care in the primary care setting was the inability to access support to maintain patients in the home setting (39.1% of respondents; 95% confidence interval, 34.6% to 43.6%). The second most common barrier was working with nonphysician providers with limited kidney–specific clinical expertise (32.3%; 95% confidence interval, 28.0% to 36.7%). Primary care physicians indicated that the two most common strategies that would enhance their ability to provide conservative management would be the ability to use the telephone to contact a nephrologist or clinical staff from the conservative care clinic (86.9%; 95% confidence interval, 83.7% to 90.0% and 85.6%; 95% confidence interval, 82.4% to 88.9%, respectively). Conclusions We identified important areas to inform clinical programs to reduce barriers and enhance facilitators to improve primary care physicians’ provision of conservative kidney care. In particular, primary care physicians require additional resources for maintaining patients in their home and telephone access to nephrologists and conservative care specialists.

Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient’s needs and perspective into the medical care they receive is essential. This article provides a framework to help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with advanced CKD. This approach involves (1) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced CKD; (3) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (4) identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced into clinical practice.

Historic migration and the ever–increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo–American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients’ responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient’s specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs.

Background: Advance care planning initiatives are being implemented across healthcare systems around the world, but how best to evaluate their implementation is unknown. Aim: To identify gaps and/or redundancies in current evaluative strategies to help healthcare systems develop future evaluative frameworks for ACP. Design: Systematic review. Methods: Peer-reviewed and gray literature searches were conducted till February 2015 to answer: “What methods have healthcare systems used to evaluate implementation of advance care planning initiatives?” A PICOS framework was developed to identify articles describing the implementation and evaluation of a health system–level advance care planning initiative. Outcome measures were mapped onto a conceptual quality indicator framework based on the Institute of Medicine and Donabedian models of healthcare quality. Results: A total of 46 studies met inclusion criteria for analysis. Most articles reported on single parts of a healthcare system (e.g. continuing care). The most common outcome measures pertained to document completion, followed by healthcare resource use. Patient-, family-, or healthcare provider-reported outcomes were less commonly measured. Concordance measures (e.g. dying in place of choice) were reported by only 26% of studies. The conceptual quality indicator framework identified gaps and redundancies in measurement and is presented as a potential foundation from which to develop a comprehensive advance care planning evaluation framework. Conclusion: Document completion is frequently used to evaluate advance care planning program implementation; capturing the quality of care appears to be more difficult. This systematic review provides health system administrators with a comprehensive summary of measures used to evaluate advance care planning and may identify gaps in evaluation within their local context.

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.

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.

Objective To determine the global capacity (availability, accessibility, quality, and affordability) to deliver kidney replacement therapy (dialysis and transplantation) and conservative kidney management. Design International cross sectional survey. Setting International Society of Nephrology (ISN) survey of 182 countries from July to September 2018. Participants Key stakeholders identified by ISN’s national and regional leaders. Main outcome measures Markers of national capacity to deliver core components of kidney replacement therapy and conservative kidney management. Results Responses were received from 160 (87.9%) of 182 countries, comprising 97.8% (7338.5 million of 7501.3 million) of the world’s population. A wide variation was found in capacity and structures for kidney replacement therapy and conservative kidney management—namely, funding mechanisms, health workforce, service delivery, and available technologies. Information on the prevalence of treated end stage kidney disease was available in 91 (42%) of 218 countries worldwide. Estimates varied more than 800-fold from 4 to 3392 per million population. Rwanda was the only low income country to report data on the prevalence of treated disease; 5 ( Conclusions These comprehensive data show the capacity of countries (including low income countries) to provide optimal care for patients with end stage kidney disease. They demonstrate substantial variability in the burden of such disease and capacity for kidney replacement therapy and conservative kidney management, which have implications for policy.

RATIONALE & OBJECTIVE: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population. STUDY DESIGN: Qualitative study using semi-structured interviews. SETTING & PARTICIPANTS: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis. ANALYTICAL APPROACH: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD. RESULTS: Nephrologists who participated in this study were primarily from academic practices (n=14) and urban areas (n=15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: 1) Person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical decision-making and being flexible to the changing needs, values and preferences of patients; and, 2) Improvising a care infrastructure, which described the challenges of managing patients conservatively within health systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different healthcare roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default and championing the principles of conservative care among their colleagues. LIMITATIONS: The themes identified here likely are not generalizable to most US nephrologists. CONCLUSION: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.

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.We aimed to undertake a current-state analysis to inform measurement and quality improvement in palliative service use in Ontario.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.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%).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.L’espérance de vie de bon nombre de patients traités par hémodialyse chronique se compare à celle des patients atteints d’un cancer métastatique. Cependant, les tendances d’utilisation des soins palliatifs à domicile chez les patients hémodialysés sont encore peu connues.Nous souhaitions faire une analyse de l’état actuel des choses afin d’éclairer sur la mesure et l’amélioration de la qualité des soins palliatifs en Ontario.Nous avons mené une étude descriptive des issues pour les patients et de l’utilisation des soins palliatifs à domicile chez les patients hémodialysés en Ontario. Plusieurs ensembles de données provinciales en soins de santé ont été employés pour procéder à l’analyse. La dernière année de vie des patients décédés entre janvier 2010 et décembre 2014 a constitué la période étudiée.Les patients satisfaisant les critères d’inclusion étaient au nombre de 9 611. La cohorte était constituée à 41 % de femmes. Au moment du décès, l’âge médian (Q1; Q3) des patients était de 75 ans (66; 82 ans) et la médiane de la durée des traitements d’hémodialyse était de trois ans en moyenne (1,0; 6,0 ans). Parmi les comorbidités recensées au décès, 65 % des patients étaient aussi diabétiques, environ un tiers (29,3 %) étaient atteints de démence et 13,9 % présentaient des néoplasmes. Dans les 30 jours précédant leur décès, 19,9 % des patients avaient cessé leurs traitements de dialyse. Au cours de la dernière année de vie, seulement 13,1 % des patients de la cohorte avaient reçu au moins un service de soins palliatifs à domicile. Lorsque comparés aux patients n’ayant reçu aucun service en soins palliatifs, ils se sont moins souvent présentés aux urgences et ont moins souvent séjourné dans les unités de soins intensifs. De plus, une plus grande proportion des patients ayant reçu des soins palliatifs sont décédés à domicile, soit 17,1 % contre 1,4 % des patients n’ayant reçu aucun service en soins palliatifs. Enfin, le taux de mortalité associé à un séjour aux soins intensifs s’est avéré bien inférieur chez les patients qui avaient reçu des soins palliatifs, soit 8,1 % contre 37,8 % pour les patients n’ayant reçu aucun service de soins palliatifs.En Ontario, une très faible proportion des patients hémodialysés a reçu du soutien par l’entremise du système de soins palliatifs à domicile au cours de la période étudiée. Il semble donc y avoir une possibilité d’améliorer l’offre de soins palliatifs parallèlement aux traitements de dialyse; et ceci pourrait avoir une incidence positive sur les patients et leurs proches, de même que sur le système de santé.

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.

BackgroundAdvance care planning (ACP) encompasses both verbal and written communications expressing preferences for future health and personal care and helps prepare people for healthcare decision-making in times of medical crisis. Healthcare systems are increasingly promoting ACP as a way to inform medical decision-making, but it is not clear how public engagement in ACP activities is changing over time.MethodsRaw data from 3 independently conducted public polls on ACP engagement, in the same Canadian province, were analysed to assess whether participation in ACP activities changed over 6 years.ResultsStatistically significant increases were observed between 2007 and 2013 in: recognising the definition of ACP (54.8% to 80.3%, OR 3.37 (95% CI 2.68 to 4.24)), discussions about healthcare preferences with family (48.4% to 59.8%, OR 1.41 (95% CI 1.17 to 1.69)) and with healthcare providers (9.1% to 17.4%, OR 1.98 (95% CI 1.51 to 2.59)), written ACP plans (21% to 34.6%, OR 1.77 (95% CI 1.45 to 2.17)) and legal documentation (23.4% to 42.7%, OR 2.13 (95% CI 1.75 to 2.59)). These remained significant after adjusting for age, education and self-rated health status.ConclusionsACP engagement increased over time, although the overall frequency remains low in certain elements such as discussing ACP with healthcare providers. We discuss factors that may be responsible for the increase and provide suggestions for healthcare systems or other public bodies seeking to stimulate engagement in ACP.

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

For over 20 years, the quality of medical care of the Medicare ESRD Program has been a concern. The Centers for Medicare and Medicaid Services have implemented the ESRD Quality Incentive Program, which uses the principles of value-based purchasing; dialysis providers are paid for performance on predefined quality measures, with a goal of improving patient outcomes and the quality of patient care. The ESRD Quality Incentive Program measures have been criticized, because they are largely disease oriented and use easy-to-obtain laboratory-based indicators, such as Kt/V and hemoglobin, that do not reflect outcomes that are most important to patients and have had a minimal effect on survival or quality of life. A key goal of improving quality of care is to enhance quality of life, a patient-important quality measure that matters more to many patients than even survival. None of the ESRD Quality Incentive Program measures assess patient-reported quality of life. As outlined in the National Quality Strategy, the Centers for Medicare and Medicaid Services are holding providers accountable in six priority domains, in which quality measures have been and are being developed for value-based purchasing. Three measures-patient experience and engagement, clinical care, and care coordination-are particularly relevant to quality care in the ESRD Program; the 2014 ESRD Quality Incentive Program includes six measures, none of which provide data from a patient-centered perspective. Value-based purchasing is a well intentioned step to improve care of patients on dialysis. However, the Centers for Medicare and Medicaid Services need to implement significant change in what is measured for the ESRD Quality Incentive Program to be patient centered and aligned with patients' values, preferences, and needs. This paper provides examples of potential quality measures for patient experience and engagement, clinical care, and care coordination, which if implemented, would be much more likely to enhance quality of life for patients with ESRD than present ESRD Quality Incentive Program measures.

Patients with progressive chronic kidney disease (CKD) have high morbidity, mortality, and symptom burden. Cardiovascular disease (CVD) and congestive heart failure (CHF) often contribute to these burdens and should be considered when providing recommendations for care. This review aims to summarize recent literature relevant to the provision of palliative and end-of-life care for patients with progressive CKD and specifically highlights issues relevant to those with CVD and CHF.Dialysis may not benefit older, frail patients with progressive CKD, especially those with other comorbidities. Patients managed conservatively (i.e., without dialysis) may live as long as patients who elect to start dialysis, with better preservation of function and quality of life and with fewer acute care admissions. Decisions regarding dialysis initiation should be made on an individual basis, keeping in mind each patient's goals, comorbidities, and underlying functional status. Conservative management of progressive kidney disease is frequently not offered but is likely to benefit many older, frail patients with comorbidities such as CHF and CVD.A palliative approach to the care of many patients with progressive CKD is essential to ensuring they receive appropriate quality care.

Background Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). Methods We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. Results Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24–38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. Conclusions Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool. Electronic supplementary material The online version of this article (10.1186/s12904-017-0236-6) contains supplementary material, which is available to authorized users.

The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: (1) the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and (2) whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis. This article outlines the ethical and legal requirements for a valid informed consent to dialysis: (1) the patient was competent, (2) the consent was made voluntarily, and (3) the patient was given sufficient information in an understandable manner to make the decision. It then considers the application of these requirements to practice across different countries. In the process of informed consent, the law requires a discussion by the physician of the material risks associated with dialysis and alternative options. We argue that, legally and ethically, this discussion should include both the anticipated trajectory of the illness and the effect on the life of the patient with particular regard to the outcomes most important to the individual. In addition, a discussion should occur about the option of a conservative, nondialysis pathway. These requirements ensure that the ethical principle of respect for patient autonomy is honored in the context of dialysis. Nephrologists need to be open to, comfortable with, and skillful in communicating this information. From these clear, open, ethically, and legally valid consent discussions, a significant dividend will hopefully flow for patients, families, and nephrologists alike.

This cohort study compares in-hospital days and intensity of care among older adults with kidney failure who were treated vs not treated with maintenance dialysis., Key Points Question Is maintenance dialysis associated with increased time in the hospital and more intensive care in older adults with kidney failure? Findings In this cohort study of 968 older adults with kidney failure, those who received dialysis spent a mean of 22 more in-hospital days each year and were almost 2 times more likely to receive intensive care than those who did not receive dialysis. Meaning These findings suggest that maintenance dialysis is associated with increased length of hospital stay and intensive care and less use of palliative care., Importance Comparative outcome data examining the association of dialysis initiation with hospital length of stay and intensity of care in older adults with kidney failure are scarce, and prior studies are limited to patients treated by nephrology teams. Objective To compare in-hospital days and intensity of care among older adults with kidney failure who were treated vs not treated with maintenance dialysis. Design, Setting, and Participants This population-based, retrospective cohort study included adults in Alberta, Canada, 65 years or older with kidney failure, defined by at least 2 consecutive outpatient estimated glomerular filtration rate values of less than 10 mL/min/1.73 m2 spanning a period of at least 90 days from May 15, 2002, to March 31, 2014. Data were analyzed from August 1, 2017, to August 29, 2019. Exposures Time-varying exposure to maintenance dialysis for treatment of kidney failure. Main Outcomes and Measures The primary outcome was rate of in-hospital days. Secondary outcomes included rates of hospital admissions, intensive care unit admissions, cardiopulmonary resuscitations, inpatient palliative care, and emergency department visits; risk of in-hospital death; and time to admission to long-term care. Results A total of 968 patients (median age, 78.5 [interquartile range, 72.4-84.7] years; 489 men [50.5%]; median follow-up, 2.0 [interquartile range, 0.8-3.9] years) were included in the analysis. Patients who underwent dialysis spent more adjusted in-hospital days per person-year (36.25 [95% CI, 30.72-41.77] vs 14.65 [95% CI, 12.28-17.02]; incidence rate ratio [IRR], 2.47 [95% CI, 1.99-3.08]). However, the dialysis group did not have a higher rate of hospital admissions (1.18 [95% CI 1.07-1.29] vs 1.32 [95% CI 1.17-1.48] per year; IRR, 0.89 [95% CI, 0.77-1.03]). Patients in the dialysis group had a higher rate of intensive care unit admissions per 1000 hospitalizations (98.37 [95% CI, 81.09-115.65] vs 54.51 [95% CI, 37.76-71.26]; IRR, 1.80 [95% CI, 1.28-2.54]) and lower rates of inpatient palliative care per 1000 in-hospital days (3.92 [95% CI, 3.13-4.72] vs 8.60 [95% CI, 6.3-11.0]; IRR, 0.45 [95% CI, 0.32-0.64]). Conclusions and Relevance In this cohort study, compared with nondialysis care, patients who received maintenance dialysis spent more time in the hospital and were more likely to be admitted to intensive care units. This finding suggests trade-offs between longer survival and higher intensity of use of health care services as a function of dialysis initiation. Maintenance dialysis may be a proxy for the type of philosophy of care driving increased in-hospital time and intensive care and less use of palliative care.