Search

In 2019, two Canadian provinces became the first jurisdictions in North America to pass deemed consent legislation to increase deceased organ donation and transplantation rates. We sought to explore the perspectives of the deemed consent legislation for organ donation in Canada from the viewpoint of individuals commenting on press articles.In this qualitative descriptive study, we extracted public comments regarding deemed consent from online articles published by four major Canadian news outlets between January 2019 and July 2020. A total of 4357 comments were extracted from 35 eligible news articles. Comments were independently analyzed by two research team members using a conventional content analysis approach.Commenters' perceptions of the deemed consent legislation for organ donation in Canada predominantly fit within three organizational groups: perceived positive implications of the bills, perceived negative implications of the bills, and key considerations. Three themes emerged within each group that summarized perspectives of the proposed legislation. Themes regarding the perceived positive implications of the bills included majority rules, societal effect, and prioritizing donation. Themes regarding the perceived negative implications of the bills were a right to choose, the potential for abuse and errors, and a possible slippery slope. Improving government transparency and communication, clarifying questions and addressing concerns, and providing evidence for the bills were identified as key considerations.If deemed consent legislation is meant to increase organ donation and transplantation, addressing public concerns will be important to ensure successful implementation.

Background Clinical pathways aim to improve patient care. We sought to determine whether an online chronic kidney disease (CKD) clinical pathway was associated with improvements in CKD management. Methods We conducted a retrospective pre/post population-based cohort study using linked health data from Alberta, Canada. We included adults 18 years or older with mean estimated glomerular filtration rate (eGFR) 2. The primary outcome was measurement of an outpatient urine albumin creatinine ratio (ACR) in a 28-day period, among people without a test in the prior year. Secondary outcomes included use of guideline-recommended drug therapies (angiotensin-converting enzyme inhibitors, angiotensin receptor blockers and statins). Results The study period spanned October 2010 to March 2017. There were 84 independent 28-day periods (53 pre, 31 post pathway implementation) including 345,058 adults. The population was predominantly female (56%) with median age 77 years; most had category 3A CKD (67%) and hypertension (82%). In adjusted segmented regression models, the increase in the rate of change of ACR testing was greatest in Calgary zone (adjusted OR 1.19 per year, 95% CI 1.16–1.21), where dissemination of the pathway was strongest; this increase was more pronounced in those without diabetes (adjusted OR 1.25 per year, 95% CI 1.21–1.29). Small improvements in guideline-concordant medication use were also observed. Conclusions Following implementation of an online CKD clinical pathway, improvements in ACR testing were evident in regions where the pathway was most actively used, particularly among individuals without diabetes.

There is limited research of electronic tools for self-management for patients with chronic kidney disease (CKD). We sought to evaluate participant engagement, perceived self-efficacy and website usage in a preliminary evaluation of My Kidneys My Health, a patient-facing eHealth tool in Canada.We conducted an explanatory sequential mixed-methods study of adults with CKD who were not on kidney replacement therapy and who had access to My Kidneys My Health for 8 weeks. Outcomes included acceptance (measured by the Technology Acceptance Model), self-efficacy (measured by the Chronic Disease Self-Efficacy Scale [CDSES]) and website usage patterns (captured using Google Analytics). We analyzed participant interviews using qualitative content analysis.Twenty-nine participants with CKD completed baseline questionnaires, of whom 22 completed end-of-study questionnaires; data saturation was achieved with 15 telephone interviews. Acceptance was high, with more than 70% of participants agreeing or strongly agreeing that the website was easy to use and useful. Of the 22 who completed end-of-study questionnaires, 18 (82%) indicated they would recommend its use to others and 16 (73%) stated they would use the website in the future. Average scores for website satisfaction and look and feel were 7.7 (standard deviation [SD] 2.0) and 8.2 (SD 2.0) out of 10, respectively. The CDSES indicated that participants gained an increase in CKD information. Interviewed participants reported that the website offered valuable information and interactive tools for patients with early or newly diagnosed CKD, or for those experiencing changes in health status. Popular website pages and interactive features included Food and Diet, What is CKD, My Question List and the Depression Screener.Participants indicated that the My Kidneys My Health website provided accessible content and tools that may improve self-efficacy and support in CKD self-management. Further evaluation of the website's effectiveness in supporting self-management among a larger, more heterogenous population is warranted.

Background The evolving COVID-19 pandemic has and continues to present a threat to health system capacity. Rapidly expanding an existing acute care physician workforce is critical to pandemic response planning in large urban academic health systems. Intervention The Medical Emergency-Pandemic Operations Command (MEOC)—a multi-specialty team of physicians, operational leaders, and support staff within an academic Department of Medicine in Calgary, Canada—partnered with its provincial health system to rapidly develop a comprehensive, scalable pandemic physician workforce plan for non-ventilated inpatients with COVID-19 across multiple hospitals. The MEOC Pandemic Plan comprised seven components, each with unique structure and processes. Methods In this manuscript, we describe MEOC’s Pandemic Plan that was designed and implemented from March to May 2020 and re-escalated in October 2020. We report on the plan’s structure and process, early implementation outcomes, and unforeseen challenges. Data sources included MEOC documents, health system, public health, and physician engagement implementation data. Key Results From March 5 to October 26, 2020, 427 patients were admitted to COVID-19 units in Calgary hospitals. In the initial implementation period (March–May 2020), MEOC communications reached over 2500 physicians, leading to 1446 physicians volunteering to provide care on COVID-19 units. Of these, 234 physicians signed up for hospital shifts, and 227 physicians received in-person personal protective equipment simulation training. Ninety-three physicians were deployed on COVID-19 units at four large acute care hospitals. The resurgence of cases in September 2020 has prompted re-escalation including re-activation of COVID-19 units. Conclusions MEOC leveraged an academic health system partnership to rapidly design, implement, and refine a comprehensive, scalable COVID-19 acute care physician workforce plan whose components are readily applicable across jurisdictions or healthcare crises. This description may guide other institutions responding to COVID-19 and future health emergencies.

People with kidney failure treated with dialysis are at increased risk of SARS-CoV-2 infection, and severe COVID-19 outcomes such as hospitalization and death. Though there are well-defined sex differences in outcomes for the general population with COVID-19, we do not know whether this translates into kidney failure populations. We aimed to estimate the differences in COVID-19 symptoms and clinical outcomes between males and females treated with maintenance dialysis.In this prospective observational cohort study, we included adults treated with maintenance dialysis in Southern Alberta, Canada that tested positive for COVID-19 between March 2020 and February 2022. We examined the association between sex (dichotomized as male and female) with COVID-19 symptoms including fever, cough, malaise, shortness of breath, muscle joints/aches, nausea and/or vomiting, loss of appetite, diarrhea, headache, sore throat, and loss of smell/taste using chi-square or Fisher's exact tests. Secondary outcomes included 30-day hospitalization, ICU admission, and death.Of 1,329 cohort participants, 246 (18.5%) tested positive for SARS-CoV-2 and were included in our study, including 95 females (39%). Of 207 participants with symptoms assessed, females had less frequent fever (p = 0.003), and more nausea or vomiting (p = 0.003) compared to males, after correction for multiple testing. Males exhibited no symptoms 25% of the time, compared with 10% of females (p = 0.01, not significant when corrected for multiple testing). We did not identify statistically significant differences in clinical outcomes between the sexes, though vaccinated patients had lower odds of hospitalization.Sex differences in COVID-19 symptoms were identified in a cohort of patients treated with maintenance dialysis, which may inform sex-specific screening strategies in dialysis units. Further work is necessary to examine mechanisms for identified sex differences.

Rationale & Objective Patients with chronic kidney disease (CKD) have high rates of emergency department (ED) use and hospitalization. Outpatient care may provide an alternative to ED and inpatient care in this population. We aimed to explore the scope of outpatient interventions used to manage acute complications of chronic diseases and highlight opportunities to adapt and test interventions in the CKD population. Study Design Scoping review of quantitative and qualitative studies. Setting & Population Outpatient interventions for adults experiencing acute complications related to 1 of 5 eligible chronic diseases (ie, CKD, chronic respiratory disease, cardiovascular disease, cancer, and diabetes). Selection Criteria for Studies MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, grey literature, and conference abstracts were searched to December 2019. Data Extraction Intervention and study characteristics were extracted using standardized tools. Analytical Approach Quantitative data were summarized descriptively; qualitative data were summarized thematically. Our approach observed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) extension for scoping reviews. Results 77 studies (25 randomized controlled trials, 29 observational, 12 uncontrolled before-after, 5 quasi-experimental, 4 qualitative, and 2 mixed method) describing 57 unique interventions were included. Of identified intervention types (hospital at home [n = 16], observation unit [n = 9], ED-based specialist service [n = 4], ambulatory program [n = 18], and telemonitoring [n = 10]), most were studied in chronic respiratory and cardiovascular disease populations. None targeted the CKD population. Interventions were delivered in the home, ED, hospital, and ambulatory setting by a variety of health care providers. Cost savings were demonstrated for most interventions, although improvements in other outcome domains were not consistently observed. Limitations Heterogeneity of included studies; lack of data for outpatient interventions for acute complications related to CKD. Conclusions Several interventions for outpatient management of acute complications of chronic disease were identified. Although none was specific to the CKD population, features could be adapted and tested to address the complex acute-care needs of patients with CKD.

Collaborative approaches to vascular access selection are being increasingly encouraged to elicit patients' preferences and priorities where no unequivocally superior choice exists. We explored how patients, their caregivers, and clinicians integrate principles of shared decision making when engaging in vascular access discussions.Qualitative description.Semistructured interviews with a purposive sample of patients, their caregivers, and clinicians from outpatient hemodialysis programs in Alberta, Canada.We used a thematic analysis approach to inductively code transcripts and generate themes to capture key concepts related to vascular access shared decision making across participant roles.42 individuals (19 patients, 2 caregivers, 21 clinicians) participated in this study. Participants identified how access-related decisions follow a series of major decisions about kidney replacement therapy and care goals that influence vascular access preferences and choice. Vascular access shared decision making was strengthened through integration of vascular access selection with dialysis-related decisions and timely, tailored, and balanced exchange of information between patients and their care team. Participants described how opportunities to revisit the vascular access decision before and after dialysis initiation helped prepare patients for their access and encouraged ongoing alignment between patients' care priorities and treatment plans. Where shared decision making was undermined, hemodialysis via a catheter ensued as the most readily available vascular access option.Our study was limited to patients and clinicians from hemodialysis care settings and included few caregiver participants.Findings suggest that earlier, or upstream, decisions about kidney replacement therapies influence how and when vascular access decisions are made. Repeated vascular access discussions that are integrated with other higher-level decisions are needed to promote vascular access shared decision making and preparedness.

Background Personal Energy Planning is a problem-solving based programme that guides people receiving maintenance haemodialysis treatment to use energy management strategies to address life participation challenges. The feasibility of training dialysis clinicians to become Personal Energy Planning coaches (i.e., programme administrators) is currently unknown. Objectives To explore the feasibility of training dialysis clinicians to administer the Personal Energy Planning programme. Design Feasibility study involving an adherence evaluation of two trained dialysis clinician coaches' problem-solving facilitation skills, and one qualitative interview with each coach. Participants Two Personal Energy Planning coaches with nursing backgrounds who administered the programme to 10 patients receiving maintenance haemodialysis treatment over a total of 34 sessions. Approach Audio recordings of one session per treatment recipient (n = 10) were evaluated using an established treatment adherence checklist. The proportion of treatment sessions where the item was observed by two adherence raters was calculated. In addition, coaches were interviewed about their experiences learning and administering the programme; interviews were analysed using inductive thematic analysis. Findings Some core facilitation skills (e.g., patient-centred goal setting and analysis of performance breakdowns) were consistently used; however, other facilitation skills (e.g., guided discovery and global problem-solving strategy) were not regularly implemented. The coaches discussed challenges (e.g., supporting patient problem-solving and fluctuating patient health) with administering the intervention. Certain training resources (e.g., coaching handbook and expert consultation) were identified as valuable to their learning. Conclusions With modifications to training materials, it might be feasible to train dialysis clinicians to administer Personal Energy Planning with people receiving maintenance haemodialysis treatment.

In North America, most people start hemodialysis via a central venous catheter ("catheter"). These patients are counseled to undergo arteriovenous fistula ("fistula") creation within weeks of starting hemodialysis because fistulas are associated with improved survival.To determine whether attempting to create a fistula in patients who start hemodialysis via a catheter is associated with improved mortality. We also sought to determine whether differences in baseline patient characteristics, vascular procedures for access-related complications, or days in hospital may confound or mediate the relationship between attempted fistula creation and mortality.Multicenter, retrospective cohort study.Six dialysis programs located in Ontario, Alberta, and Manitoba.Patients aged ≥18 years who initiated hemodialysis via a catheter between January 1, 2004, and May 31, 2012, who had not had a previous attempt at fistula creation. We excluded those who had a life expectancy less than 1 year, who transitioned to peritoneal dialysis within 6 months of starting dialysis, and people who started hemodialysis via a graft.Attempted fistula creation, all-cause mortality, patient characteristics and comorbidities, vascular procedures for access-related complications, and days spent in hospital.We used survival methods, including marginal structural models, to account for immortal time bias and time-varying confounding.In total, 1832 patients initiated hemodialysis via a catheter during the study period and met inclusion criteria. Of these patients, 565 (31%) underwent an attempt at fistula creation following hemodialysis start. As compared to those who did not receive a fistula attempt, these people were younger, had fewer comorbidities, and were more likely to have started dialysis as an outpatient and to have received pre-dialysis care. In a marginal structural model controlling for baseline characteristics and comorbidities, attempted fistula creation was associated with a significantly lower mortality (hazard ratio [HR] = 0.53; 95% confidence interval [CI] = 0.43-0.66). This effect did not appear to be confounded or mediated by differences in the number of days spent in hospital or vascular procedures for access-related complications. It also remained similar in analyses restricted to patients who survived at least 6 months (HR = 0.60; 95% CI = 0.47-0.77) and to patients who started hemodialysis as an outpatient (HR = 0.48; 95% CI = 0.33-0.68).There is likely residual confounding and treatment selection bias.In this multicenter cohort study, attempting fistula creation in people who started hemodialysis via a catheter was associated with significantly reduced mortality. This reduction in mortality could not be explained by differences in patient characteristics or comorbidities, days spent in hospital, or vascular procedures for access-related complications. Residual confounding or selection bias may explain the observed benefits of fistulas for hemodialysis access.Not applicable (cohort study).En Amérique du Nord, la plupart des patients amorcent l’hémodialyse avec un cathéter veineux central (cathéter). Dans les semaines qui suivent le début de la dialyse, on conseille à ces patients la création d’une fistule artérioveineuse (fistule), cette dernière étant associée à un taux de survie accru.Vérifier si la tentative de créer une fistule est associée à un accroissement de la survie chez les patients ayant amorcé l’hémodialyse avec un cathéter. Nous souhaitions aussi évaluer si les différences dans les caractéristiques initiales des patients, les interventions vasculaires pour gérer les complications liées à l’accès ou la durée du séjour pouvaient aggraver ou médier la relation entre la mortalité et le fait de tenter la création d’une fistule.Étude de cohorte rétrospective menée dans plusieurs centres.Six programmes de dialyse situés en Ontario, en Alberta et au Manitoba.Les patients adultes ayant amorcé l’hémodialyse avec un cathéter entre le 1er janvier 2004 et le 31 mai 2012, et n’ayant pas antérieurement tenté la création d’une fistule. Ont été exclus les patients ayant une espérance de vie inférieure à un an, ceux qui étaient passés à la dialyse péritonéale dans les six mois suivant le début de la dialyse, et ceux qui avaient commencé l’hémodialyse par un greffon artérioveineux.La tentative de création d’une fistule, la mortalité toutes causes confondues, les caractéristiques initiales et comorbidités des patients, les interventions vasculaires pour gérer les complications liées à l’accès et le nombre jours passés à l’hôpital.Nous avons utilisé des méthodes de survie, notamment des modèles structurels marginaux, pour tenir compte du biais d’immortalité et des facteurs confusionnels variables dans le temps.Au cours de la période étudiée, 1 832 patients avaient amorcé une hémodialyse avec un cathéter et répondaient aux critères d’inclusion. Parmi eux, 565 (31 %) avaient tenté la création d’une fistule après le début de l’hémodialyse. Ces patients étaient plus jeunes, présentaient moins de comorbidités et étaient plus susceptibles d’avoir amorcé la dialyse en clinique externe et d’avoir reçu des soins de prédialyse que les patients qui n’avaient pas tenté la création d’une fistule. Dans un modèle structurel marginal contrôlant les caractéristiques initiales et les comorbidités, la tentative de création d’une fistule a été associée à un taux de mortalité significativement inférieur [risque relatif (RR) : 0,53; intervalle de confiance (IC) à 95 % : 0,43-0,66]. Cet effet n’a pas semblé aggravé ou médié par des différences dans la durée du séjour à l’hôpital ou par les interventions vasculaires pour gérer les complications liées à l’accès. Cela est également demeuré similaire dans les analyses, mais uniquement chez les patients ayant survécu au moins 6 mois (RR : 0,60; IC 95 % : 0,47-0,77) et chez les patients ayant commencé l’hémodialyse en clinique externe (RR : 0,48; IC 95 % : 0,33-0,68).Probabilité de facteurs de confusion résiduels et de biais relatifs au choix du traitement.Dans cette étude de cohorte multicentrique, la création d’une fistule chez des patients ayant commencé l’hémodialyse avec un cathéter a été associée à une réduction significative de la mortalité. Cette réduction de la mortalité n’a cependant pas pu être expliquée par des différences dans les caractéristiques ou les comorbidités des patients, par la durée du séjour à l’hôpital ou par les interventions vasculaires pratiquées pour gérer les complications liées à l’accès. Un biais de sélection ou des facteurs de confusion résiduels pourraient expliquer les bienfaits observés par la création d’une fistule pour l’accès à l’hémodialyse.

Rationale & Objective Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients’ needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. Study Design Descriptive qualitative study using semi-structured interviews and focus groups. Setting & Participants 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. Analytic Approach Thematic analysis. Results 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). Limitations Participants were primarily white, educated, married, and English speaking, which limits generalizability. Conclusions There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.

Background Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. Methods A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. Results There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. Interpretation A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.

Background There is ongoing controversy around the surrogacy of proteinuria or albuminuria, particularly for cardiovascular (CV) outcomes, which remain the leading cause of morbidity and mortality among patients with chronic kidney disease. We performed a systematic review and meta-analysis of the literature to assess the surrogacy of changing proteinuria or albuminuria for CV events, end-stage renal disease (ESRD), and all-cause mortality. Methods CENTRAL, EMBASE, and MEDLINE were searched (from inception to October 2017). All randomized controlled trials in adults that reported change in proteinuria or albuminuria and ≥ 10 CV, ESRD, or all-cause mortality events were included. We calculated treatment effect ratios (TERs), defined as the ratio of the treatment effect on a clinical outcome and the effect on the change in the surrogate outcome. TERs close to 1 indicate greater agreement between the clinical outcome and changing proteinuria or albuminuria. Results Thirty-six trials were included in the meta-analysis. We observed inconsistent treatment effects for proteinuria and CV events (20 trials; TER 1.11 [95% confidence interval (CI), 1.01-1.22]) with moderate heterogeneity (I2 = 51%, P = 0.005). Treatment effects on proteinuria or albuminuria were also inconsistent with the effects on all-cause mortality (21 trials; TER 1.17 [95% CI, 1.07-1.28]; I2 = 35%, P for heterogeneity = 0.06), although they were similar with the effects on ESRD (23 trials; TER 0.99 [95% CI, 0.88-1.13]; I2 = 9%, P for heterogeneity = 0.337). Conclusions Change in proteinuria or albuminuria might be a suitable surrogate outcome for ESRD. However, overall treatment effects on these potential surrogates are inconsistent and overestimate the treatment effects on CV events and all-cause mortality.

Genetic testing results are currently obtained approximately 1 year after referral to a medical genetics team for autosomal dominant polycystic kidney disease (ADPKD). We evaluated a mainstream genetic testing (MGT) pathway whereby the nephrology team provided pre-test counseling and selection of patients with suspected ADPKD for genetic testing prior to direct patient interaction by a medical geneticist.A multidisciplinary team of nephrologists, genetic counselors, and medical geneticists developed an MGT pathway for ADPKD using current testing criteria for adult patient with suspected ADPKD and literature from MGT in oncology.An MGT pathway was assessed using a prospective cohort and compared to a retrospective cohort of 56 patients with ADPKD who received genetic testing using the standard, traditional pathway prior to implementing the MGT for ADPKD. The mainstream pathway was evaluated using time to diagnosis, diagnostic yield, and a patient survey to assess patient perceptions of the MGT pathway.We assessed 26 patients with ADPKD using the MGT and 18 underwent genetic testing with return of results. Of them, 52 patients had data available for analysis in the traditional control cohort. The time for return of results using our MGT pathway was significantly shorter with a median time to results of 6 months compared to 12 months for the traditional pathway. We identified causative variants in 61% of patients, variants of uncertain significance in 28%, and 10% had negative testing which is in line with expectations from the literature. The patient surveys showed high satisfaction rates with the MGT pathway.This report is an evaluation of a new genetic testing pathway restricted to a single, publicly funded health care center. The MGT pathway involved a prospective collection of a limited number of patients with ADPKD with comparison to a retrospective cohort of patients with ADPKD evaluated by standard testing.A MGT pathway using clearly defined criteria and commercially available gene panels for ADPKD can be successfully implemented in a publicly funded health care system to reduce the time required to obtain genetic results.Actuellement, les résultats du dépistage génétique pour la maladie polykystique rénale autosomique dominante (ADPKD) sont obtenus environ un an après l’aiguillage en médecine génique. Nous avons évalué un parcours de dépistage génétique intégré (DGI) où l’équipe de néphrologie fournit des conseils pré-dépistage et sélectionne les patients soupçonnés d’ADPKD pour un test génétique avant l’interaction directe du patient avec un généticien médical.Une équipe multidisciplinaire constituée de néphrologues, de conseillers en génétique et de généticiens médicaux a développé un parcours de DGI à partir des critères existants pour les patients adultes soupçonnés d’ADPKD et de la littérature portant sur le DGI en oncologie.Le parcours de DGI a été évalué dans une cohorte prospective puis comparé à une cohorte rétrospective de 56 patients atteints d’ADPKD ayant subi un dépistage génétique selon le parcours traditionnel, avant la mise en œuvre d’un parcours de DGI pour l’ADPKD. Le parcours intégré a été évalué en tenant compte du temps requis pour poser le diagnostic, du rendement diagnostique et d’un sondage auprès des patients évaluant leurs perceptions à l’égard du parcours lui-même.Le parcours de DGI a permis d’évaluer 26 patients atteints d’ADPKD, dont 18 ont subi des tests génétiques avec retour des résultats. Dans la cohorte témoin (dépistage traditionnel), 52 patients disposaient de données disponibles pour l’analyse. Le délai médian pour l’obtention des résultats était significativement plus court avec le parcours de DGI qu’avec le parcours traditionnel (6 mois c. 12 mois). Des variantes causales ont été relevées chez 61 % des patients, 28 % des patients présentaient des variantes de signification incertaine et 10 % ont obtenu des résultats négatifs, ce qui est conforme aux attentes posées par les résultats rapportés dans la littérature. Les sondages menés auprès des patients ont montré des taux de satisfaction élevés à l’égard du parcours de DGI.Ce rapport constitue l’évaluation d’un nouveau parcours de dépistage génétique limitée à un seul centre de soins de santé public. Ce parcours de DGI a été évalué dans une cohorte prospective formée d’un nombre limité de patients atteints d’ADPKD par rapport à une cohorte rétrospective de patients atteints d’ADPKD évalués par la méthode traditionnelle.Un parcours de DGI utilisant des critères clairement définis et des panels génétiques pour l’ADPKD disponible commercialement peut être mis en œuvre avec succès dans un système de santé public et accélérer l’obtention des résultats génétiques.

PURPOSE OF REVIEW Albuminuria is associated with progression of kidney disease and is the accepted gold standard for screening, staging, and prognostication of chronic kidney disease. This review focuses on current literature that has explored applications of albuminuria as a surrogate outcome, variable used in kidney failure risk prediction for novel populations, and variable that may be predicted by other proteinuria measures. RECENT FINDINGS Change in albuminuria shows promise as a surrogate outcome for kidney failure, which may have major implications for trial design and conduct. The kidney failure risk equation (KFRE) has been validated extensively to date and has now been applied to pediatric patients with kidney disease, advanced age, different causes of kidney disease, various countries, and those with prior kidney transplants. As albumin-to-creatinine ratios (ACRs) are not always available to clinicians and researchers, two recent studies have independently developed equations to estimate ACR from other proteinuria measures. SUMMARY The utility of albuminuria and the KFRE continues to grow in novel populations. With the ability to convert more widely available (and inexpensive) proteinuria measures to ACR estimates, the prospect of incorporating kidney failure risk prediction into routine care within economically challenged healthcare jurisdictions may finally be realized.

Fatigue is a pervasive symptom among patients with chronic kidney disease (CKD) that is associated with several adverse outcomes, but the incidence of hospitalization for fatigue is unknown.To explore the association between estimated glomerular filtration rate (eGFR) and incidence of hospitalization for fatigue.Population-based retrospective cohort study using a provincial administrative dataset.Alberta, Canada.People above age 18 who had at least 1 outpatient serum creatinine measurement taken in Alberta between January 1, 2009, and December 31, 2016.The first outpatient serum creatinine was used to estimate GFR. Hospitalization for fatigue was identified using International Classification of Diseases, Tenth Revision (ICD-10) code R53.x.Patients were stratified by CKD category based on their index eGFR. We used negative binomial regression to determine if there was an increased incidence of hospitalization for fatigue by declining kidney function (reference eGFR ≥ 60 mL/min/1.73mThe study cohort consisted of 2 823 270 adults, with a mean age of 46.1 years and median follow-up duration of 6.0 years; 5 422 hospitalizations for fatigue occurred over 14 703 914 person-years of follow-up. Adjusted rates of hospitalization for fatigue increased with decreasing kidney function, across all age strata. The highest rates were seen in adults on dialysis (adjusted incident rate ratios 24.47, 6.66, and 3.13 for those aged 18 to 64, 65 to 74, and 75+, respectively, compared with eGFR ≥ 60 mL/min/1.73mFatigue hospitalization codes have not been validated; reference group limited to adults with at least 1 outpatient serum creatinine measurement; remaining potential for residual confounding.Declining kidney function was associated with increased incidence of hospitalization for fatigue. Further research into ways to address fatigue in the CKD population is warranted.Not applicable (not a clinical trial).La fatigue est un symptôme généralisé et associé à plusieurs effets indésirables chez les patients atteints d’insuffisance rénale chronique (IRC). L’incidence des hospitalisations liées à la fatigue est néanmoins inconnue.Examiner l’association entre le débit de filtration glomérulaire estimé (DFGe) et l’incidence d’hospitalization pour fatigue.Étude de cohorte rétrospective représentative d’une population et menée avec un ensemble de données administratives provinciales.Alberta, Canada.Les patients adultes de l’Alberta ayant eu au moins une mesure de créatinine sérique en consultation externe entre le 1er janvier 2009 et le 31 décembre 2016.La première mesure du taux de créatinine sérique en consultation externe a été utilisée pour estimer le DFG. L’hospitalization pour fatigue a été définie avec le code CIM-10 R53.x.Les patients ont été stratifiés par catégorie d’IRC en fonction de l’indice de DFGe. Une régression binomiale négative a servi à déterminer si le déclin de la fonction rénale (référence: DFGe ≥ 60 mL/min/1,73 mL’étude porte sur 2 823 270 adultes (âge moyen: 46,1 ans) dont la durée médiane de suivi s’établissait à 6,0 ans. Au cours des 14 703 914 années-personnes de suivi, 5 422 hospitalisations pour fatigue ont été répertoriées. Les taux corrigés d’hospitalization pour fatigue ont augmenté avec le déclin de la fonction rénale pour toutes les strates d’âges. Les taux les plus élevés ont été observés chez les patients dialysés (rapports des taux d’incidents corrigés: 24,47 [patients de 18 à 64 ans]; 6,66 [patients de 65 à 74 ans] et 3,13 [patients de 75 ans et plus] comparativement à un DFGe ≥ 60 mL/min/1,73 mLes codes d’hospitalization pour fatigue n’ont pas été validés; le groupe de référence a été limité aux adultes ayant au moins une mesure de créatinine sérique en consultation externe; possibilité de facteurs de confusion résiduels.Le déclin de la fonction rénale a été associé à une incidence accrue d’hospitalization pour fatigue. Ces résultats justifient de poursuivre les recherches sur les moyens de remédier à la fatigue chez les patients atteints d’IRC.

ObjectivesPersons with advanced chronic kidney disease (CKD) have unique support needs associated with managing a chronic yet often silent condition, complex treatment-related decisions and care transitions. The aim of this study was to explore perspectives on how peer support could address CKD support needs and augment care.DesignThis study employed a qualitative descriptive methodology. Data were collected through focus groups (cofacilitated by patient partners) and semistructured interviews.SettingFour multidisciplinary CKD clinics across Southern Alberta, Canada.ParticipantsWe purposively sampled among adult patients with advanced, non-dialysis CKD and their caregivers, as well as trained peer mentors from The Kidney Foundation of Canada’s Kidney Connect programme.AnalysisTranscripts were coded in duplicate, and themes were generated inductively through a thematic analysis approach.ResultsWe conducted seven focus groups with a total of 39 patient and caregiver participants. Seven patients and caregivers who were unable to attend a focus group and 13 peer mentors participated in a telephone interview. Although patients and caregivers had limited awareness of peer support, participants acknowledged its central role in affirming their experiences and enabling confidence to live well with kidney disease. We identified four themes related to the anticipated role of peer support in addressing support needs for people with non-dialysis CKD: (1) creating connection; (2) preparing for uncertainty; (3) adapting to new realities; and (4) responsive peer support delivery. Aligning peer support access with patient readiness and existing CKD management supports can promote optimism, community and pragmatic adaptations to challenges.ConclusionsPatients, caregivers and peer mentors highlighted a unique value in the shared experiences of CKD peers to anticipate and manage disease-related challenges and confidently face a future living with kidney disease.

Background Patients with chronic kidney disease (CKD) and heart disease face challenging treatment decisions. We sought to explore the perceptions of patients and physicians about shared decision-making for coronary procedures for people with CKD, as well as opinions about strategies and tools to improve these decisions. Methods We partnered with 4 patients with CKD and 1 caregiver to design and conduct a qualitative descriptive study using semi-structured interviews and content analysis. Patient participants with CKD and either acute coronary syndrome or cardiac catheterization in the preceding year were recruited from a provincial cardiac registry, cardiology wards and clinics in Calgary between March and September 2018. Cardiologists from the region also participated in the study. Data analysis emphasized identifying, organizing and describing themes found within the data. Results Twenty patients with CKD and 10 cardiologists identified several complexities related to bidirectional information exchange needed for shared decision-making. Themes identified by both patients and physicians included challenges synthesizing best evidence, variable patient knowledge seeking, timeliness in the acute care setting and influence of roles on decision-making. Themes identified by physicians related to processes and tools to help support shared decision-making in this setting included personalization to reflect the variability of risks and heterogeneity of patient preferences as well as allowing for physicians to share their clinical judgment. Interpretation There are complexities related to bidirectional information exchange between patients with CKD and their physicians for shared decision-making about coronary procedures. Processes and tools to facilitate shared decision-making in this setting require personalization and need to be time sensitive.

Sexual dysfunction occurs commonly in people with chronic kidney disease (CKD) and has been recognized as a research priority. We sought to evaluate the current state of the literature addressing sexual dysfunction in people with CKD and identify barriers and strategies to improve our management of this important symptom.OVID Medline and Google Scholar were searched for English, peer-reviewed studies using keywords and terms related to "Chronic Kidney Disease," "sexuality," and "sexual dysfunction OR function."In this narrative review, we describe definitions of sexual dysfunction and contributors exacerbated by CKD, barriers to researching sexual dysfunction in people with CKD, and possible avenues for future research.Sexual dysfunction is common in people with CKD and results from a combination of kidney disease itself, as well as its associated physical (ie, comorbidities) and nonphysical factors. Barriers to the study of sexual dysfunction in CKD include inconsistent disease definitions, stigma, variable efficacy and safety of established therapies, and evolving gender roles in sexual function. Potential avenues for future research to improve the sexual function in people with CKD may include evaluating the safety and efficacy of established therapies in people with CKD using a variety of observational and interventional study designs, engaging people with CKD and multidisciplinary team members in research, and using implementation science methods to translate what is known about sexual function into clinical practice. Concerted efforts are required to break down barriers and improve sexual function in people with CKD. Patients have identified this as an important research priority, and national networks need to direct efforts to reduce symptom burden.This narrative review was limited by a paucity of high-quality studies examining sexual dysfunction specifically in people with kidney disease.Les dysfonctions sexuelles sont fréquentes chez les personnes atteintes d’insuffisance rénale chronique (IRC) et ont été reconnues comme une priorité de recherche. Cette revue avait pour objectif d’évaluer la documentation actuelle traitant du dysfonctionnement sexuel chez les personnes atteintes d’IRC et de répertorier les obstacles à la recherche dans ce domaine et les stratégies qui permettent d’améliorer la gestion de cet important symptôme.Les bases de données OVID Medline et Google Scholar ont été consultées à la recherche des études rédigées en anglais et évaluées par des pairs à l’aide de mots-clés et de termes liés àCette revue narrative présente les définitions de la dysfonction sexuelle et les contributeurs exacerbés par l’IRC. Elle décrit également les obstacles limitant la recherche sur le dysfonctionnement sexuel chez les personnes atteintes d’IRC et cerne de possibles pistes pour les recherches futures.Le dysfonctionnement sexuel est fréquent chez les personnes atteintes d’IRC et résulte d’une combinaison de la néphropathie elle-même et de facteurs physiques (c.-à-d. les maladies concomitantes) et non physiques qui y sont associés. Les obstacles limitant l’étude de la dysfonction sexuelle en contexte d’IRC comprennent: 1) l’incohérence dans les différentes définitions de maladie; 2) la stigmatization; 3) l’efficacité et l’innocuité variables des thérapies existantes; et 4) le caractère évolutif des rôles des genres dans la fonction sexuelle. Les possibles axes de recherche pour les études futures pourraient inclure: 1) l’utilization d’une variété de modèles d’études observationnelles et interventionnelles pour évaluer l’innocuité et l’efficacité des thérapies existantes dans cette population de patients; 2) la participation de patients et de membres de l’équipe multidisciplinaire à la recherche, et 3) l’utilization de méthodes scientifiques de mise en œuvre afin de traduire les connaissances dans la pratique clinique. Des efforts concertés sont nécessaires pour éliminer les obstacles à la recherche et améliorer la fonction sexuelle des personnes atteintes d’IRC. Il s’agit d’une importante priorité de recherche pour les patients, et les réseaux nationaux se doivent d’orienter leurs efforts vers la réduction du fardeau des symptômes.Cette revue narrative était limitée par le manque d’études de haute qualité examinant spécifiquement la dysfonction sexuelle chez les personnes atteintes de néphropathies.

BACKGROUND Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those who care for them. Self-management has been shown to slow CKD progression and improve the quality of life of individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed, web-based tool for CKD self-management that can be individualized to a patient’s unique situation, priorities, and preferences. We addressed this gap using an integrated knowledge translation method and patient engagement principles. OBJECTIVE The aim of this study is to conduct systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (nondialysis and nontransplant) and their caregivers to enhance self-management support. METHODS A multistep, iterative system development cycle was used to co-design and test the My Kidneys My Health prototype. The 3-step process included creating website features and content using 2 sequential focus groups with patients with CKD and caregivers, heuristic testing using the 10 heuristic principles by Nielsen, and usability testing through in-person 60-minute interviews with patients with CKD and their caregivers. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. RESULTS In step 1, 18 participants (14 patients and 4 caregivers) attended one of the 2 sequential focus groups. The participants provided specific suggestions for simplifying navigation as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. A total of 5 reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Furthermore, 5 participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean system usability score of 90 out of 100. CONCLUSIONS The My Kidneys My Health prototype is a systematically developed, multifaceted, web-based CKD self-management support tool guided by the theory and preferences of patients with CKD and their caregivers. The website is user friendly and provides features that improve user experience by tailoring the content and resources to their needs. A feasibility study will provide insights into the acceptability of and engagement with the prototype and identify preliminary patient-reported outcomes (eg, self-efficacy) as well as potential factors related to implementation. This work is relevant given the shift to virtual care during the current pandemic times and provides patients with support when in-person care is restricted. CLINICALTRIAL

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.

Importance Using the same level of estimated glomerular filtration rate (eGFR) to define chronic kidney disease (CKD) regardless of patient age may classify many elderly people with a normal physiological age-related eGFR decline as having a disease. Objective To compare the outcomes associated with CKD as defined by a fixed vs an age-adapted eGFR threshold. Design, Setting, and Participants This population-based cohort study was conducted in Alberta, Canada and used linked administrative and laboratory data from adults with incident CKD from April 1, 2009, to March 31, 2017, defined by a sustained reduction in eGFR for longer than 3 months below a fixed or an age-adapted eGFR threshold. Non-CKD controls were defined as being 65 years or older with a sustained eGFR of 60 to 89 mL/min/1.73 m2for longer than 3 months and normal/mild albuminuria. The follow-up ended on March 31, 2019. The data were analyzed from February to April 2020. Exposures A fixed eGFR threshold of 60 vs thresholds of 75, 60, and 45 mL/min/1.73 m2for age younger than 40, 40 to 64, and 65 years or older, respectively. Main Outcomes and Measures Competing risks of kidney failure (kidney replacement initiation or sustained eGFR 3 months) and death without kidney failure. Results The fixed and age-adapted CKD cohorts included 127 132 (69 546 women [54.7%], 57 586 men [45.3%]) and 81 209 adults (44 582 women [54.9%], 36 627 men [45.1%]), respectively (537 vs 343 new cases per 100 000 person-years). The fixed-threshold cohort had lower risks of kidney failure (1.7% vs 3.0% at 5 years) and death (21.9% vs 25.4%) than the age-adapted cohort. A total of 53 906 adults were included in both cohorts. Of the individuals included in the fixed-threshold cohort only (n = 72 703), 54 342 (75%) were 65 years or older and had baseline eGFR of 45 to 59 mL/min/1.73 m2with normal/mild albuminuria. The 5-year risks of kidney failure and death among these elderly people were similar to those of non-CKD controls, with a risk of kidney failure of 0.12% or less in both groups across all age categories and a risk of death at 69, 122, 279, and 935 times higher than the risk of kidney failure for 65 to 69, 70 to 74, 75 to 79, and 80 years or older, respectively. Conclusions and Relevance This cohort study of adults with CKD suggests that the current criteria for CKD that use the same eGFR threshold for all ages may result in overestimation of the CKD burden in an aging population, overdiagnosis, and unnecessary interventions in many elderly people who have age-related loss of eGFR.

Background We describe differences for probability of receiving a fistula attempt, achieving fistula use, remaining catheter-free and the rate of access-related procedures as a function of sex. Methods Prospectively collected vascular access data on incident dialysis patients from five Canadian programs using the Dialysis Measurement Analysis and Reporting System to determine differences in fistula-related outcomes between women and men. The probability of receiving a fistula attempt and the probability of fistula use were determined using binary logistic regression. Catheter and fistula procedure rates were described using Poisson regression. We studied time to fistula attempt and time to fistula use, accounting for competing risks. Results We included 1446 (61%) men and 929 (39%) women. Men had a lower body mass index (P Conclusion Compared with men, fewer women undergo a fistula attempt. This disparity increases after adjusting for comorbidities. Women have the same number of fistula procedures as men but are less likely to successfully use their fistula.