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

The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization.This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city).We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20).Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

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

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.

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

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.