Occupational Priorities of People on Hemodialysis Who Participated in Energy Management Education.

Background. People with kidney failure who undergo hemodialysis treatment and experience chronic fatigue identify negative effects on occupational performance and participation as a key aspect of their illness experience. Purpose. To describe the occupational performance and participation problems of people treated with hemodialysis who live with debilitating fatigue. Method. Fifteen participants, who were randomized to participate in an energy management intervention as part of a randomized controlled trial, completed two occupation-based assessments at baseline and chose three priority occupational performance or participation problems to address as goals during the intervention. Results were analyzed using descriptive statistics (counts and percentages). Findings. Fifteen participants (mean age 60, 53% male) completed the occupation-based assessments. Participants stated that they wanted or needed more energy for a median of 22 of 55 occupations. Going out for food/drinks (n = 11), going to a movie/concert/performance (n = 10), and food preparation/clean-up (n = 10) were the top occupations for which participants required more energy. Prioritized occupational performance and participation problems most often fell within the household management (14 goals), self-care (6 goals), and hobbies (5 goals) domains. Conclusion. Occupational performance and participation problems are extensive among people treated with hemodialysis who live with debilitating fatigue. There is a clear need for occupation-based interventions that optimize occupational performance and participation in this population.

Implementing a Formalized Risk-Based Approach to Determine Candidacy for Multidisciplinary CKD Care: A Descriptive Cohort Study.

Background: The kidney failure risk equation (KFRE) can be used to predict progression to end-stage kidney disease in a clinical setting. Objective: Evaluate implementation of a formalized risk-based approach in nephrologists' outpatient clinics and multidisciplinary chronic kidney disease (CKD) clinics to determine candidacy for multidisciplinary care, and the impact of CKD care selection on clinical outcomes. Design: Population-based descriptive cohort study. Setting: Alberta Kidney Care South. Patients: Adults attending or considered for a multidisciplinary CKD clinic between April 1, 2017, and March 31, 2019. Measurements: Exposure-The course of CKD care assigned by the nephrologist: management at multidisciplinary CKD clinic; management by a nephrologist or primary care physician. Primary Outcome-CKD progression, defined as commencement of kidney replacement therapy (KRT). Secondary Outcomes-Death, emergency department visits, and hospitalizations. Methods: We linked operational data from the clinics (available until March 31, 2019) with administrative health and laboratory data (available until March 31, 2020). Comparisons among patient groups, courses of care, and clinical settings with negative binomial regression count models and calculated unadjusted and fully adjusted incidence rate ratios. For the all-cause death outcome, we used Cox survival models to calculate unadjusted and fully adjusted hazard ratios. Results: Of the 1748 patients for whom a KFRE was completed, 1347 (77%) remained in or were admitted to a multidisciplinary CKD clinic, 310 (18%) were managed by a nephrologist only, and 91 (5%) were referred back for management by their primary care physician. There was a much higher kidney failure risk among patients who remained at or were admitted to a multidisciplinary CKD clinic (median 2-year risk of 34.7% compared with 3.6% and 0.8% who remained with a nephrologist or primary care physician, respectively). None of the people managed by their primary care physician alone commenced KRT, while only 2 (0.6%) managed by a nephrologist without multidisciplinary CKD care commenced KRT. The rates of emergency department visits, hospitalizations, and death were lower in those assigned to management outside the multidisciplinary CKD clinics when compared with those managed in the multidisciplinary care setting. Limitations: The follow-up period may not have been long enough to determine outcomes, and potentially limited generalizability given variability of care in multidisciplinary clinics. Conclusions: Our findings indicate that a portion of patients can be directed to less resource-intensive care without a higher risk of adverse events. Trial registration: Not applicable.

Contexte: L'équation KFRE (Kidney Failure Risk Equation) peut être utilisée en environnement clinique pour prédire le risque d'évolution vers l'insuffisance rénale terminale (IRT). Objectif: Évaluer la mise en œuvre d'une approche structurée fondée sur le risque dans les cliniques multidisciplinaires d'insuffisance rénale chronique (IRC) et les cliniques ambulatoires des néphrologues afin de déterminer l'aptitude des patients à recevoir des soins multidisciplinaires et de mesurer l'incidence des soins d'IRC reçus sur les résultats cliniques. Conception: Étude de cohorte populationnelle descriptive. Cadre: Alberta Kidney Care South. Sujets: Adultes fréquentant ou envisageant de fréquenter une clinique multidisciplinaire d'IRC entre le 1er avril 2017 et le 31 mars 2019. Mesures: Exposition­le parcours de soins d'IRC attribué par le néphrologue ­ prise en charge en clinique multidisciplinaire d'IRC; prise en charge par un néphrologue ou un médecin de premier recours. Principaux résultats­progression de l'IRC, définie comme l'amorce d'une thérapie de remplacement rénal (TRR). Résultats secondaires­décès, visites aux urgences et hospitalisations. Méthodologie: Nous avons couplé les données opérationnelles des cliniques (disponibles jusqu'au 31 mars 2019) aux données administratives de santé et aux données de laboratoire (disponibles jusqu'au 31 mars 2020). Des modèles de régression binomiale négative et des rapports des taux d'incidence non corrigés et entièrement corrigés ont servi aux comparaisons entre les groupes de patients, les parcours de soins et les environnements cliniques. Les risques relatifs non corrigés et entièrement corrigés de décès toutes causes confondues ont été calculés à l'aide de modèles de survie de Cox. Résultats: Des 1 748 patients avec une KFRE calculée, 1 347 (77 %) sont restés ou ont été admis dans une clinique multidisciplinaire d'IRC, 310 (18 %) ont été pris en charge par un néphrologue seulement et 91 (5 %) ont été orientés pour une prise en charge par leur médecin de premier recours. Le risque d'insuffisance rénale terminale était beaucoup plus élevé chez les patients restés ou admis dans une clinique multidisciplinaire d'IRC (risque médian à 2 ans : 34,7 %) que chez ceux pris en charge par un néphrologue (3,6 %) et par un médecin de premier recours (0,8 %). Aucun patient pris en charge par un médecin de premier recours n'avait amorcé une TRR; 2 personnes (0,6 %) prises en charge par un néphrologue sans soins multidisciplinaires d'IRC avaient amorcé une TRR. Les taux de visites aux urgences, d'hospitalisations et de décès étaient plus faibles chez les patients pris en charge à l'extérieur des cliniques multidisciplinaires d'IRC comparativement à ceux pris en charge dans ces cliniques. Limites: La période de suivi n'était peut-être pas été assez longue pour déterminer les résultats. La variabilité des soins dans les cliniques multidisciplinaires pourrait également limiter la généralisation des résultats. Conclusion: Nos résultats suggèrent qu'une partie des patients pourrait être dirigée vers des soins nécessitant moins de ressources sans hausser le risque d'événements indésirables.

A pilot randomised controlled trial of an energy management programme for adults on maintenance haemodialysis: the fatigue-HD study.

BACKGROUND: Identifying interventions to reduce fatigue and improve life participation are top research priorities of people on maintenance haemodialysis. OBJECTIVE: Our primary objective was to explore the feasibility of conducting a randomised controlled trial of an energy management programme for people on maintenance haemodialysis. DESIGN: Parallel-arm, 1:1, blinded, pilot randomised controlled trial. PARTICIPANTS: Participants were recruited from 6 dialysis units in Calgary, Canada. Eligible patients were on maintenance haemodialysis, clinically stable and reported disabling fatigue on the Fatigue Severity Scale items 5, 7, 8 and 9. RANDOMISATION: Participants were randomised using a computer-generated random number sequence according to permuted blocked randomisation, stratified by dialysis unit. BLINDING: Participants were blinded to treatment allocation. INTERVENTIONS: Participants received an attention control (general disease self-management education) or the Personal Energy Planning (PEP) programme, a tailored, web-supported 7-9 weeks energy management programme. OUTCOMES: Eligibility, recruitment and attrition rates were recorded, and standardised intervention effects (Hedge's G) were calculated for fatigue and life participation questionnaires at one1-week postintervention and 12-week postintervention. RESULTS: 159 of 253 screened patients were eligible to be approached. 42 (26%) had fatigue, were interested and consented to participate, of whom 30 met eligibility criteria and were randomised (mean age 62.4 years (±14.7), 60% male). 22 enrolled participants (73%) completed all study procedures. Medium-sized intervention effects were observed on the Canadian Occupational Performance Measure (COPM)-Performance Scale, Global Life Participation Scale and Global Life Participation Satisfaction Scale at 1-week postintervention follow-up, compared with control. At 12-week follow-up, large and very large intervention effects were observed on the COPM-Performance Scale and COPM-Satisfaction Scale, respectively. CONCLUSION: It is feasible to enrol and follow patients on haemodialysis in a randomised controlled trial of an energy management intervention. As the intervention was associated with improved life participation on some measures, a larger trial is justified.

Training clinicians in a problem-solving fatigue programme for patients receiving maintenance haemodialysis.

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.

Video Visits Using the Zoom for Healthcare Platform for People Receiving Maintenance Hemodialysis and Nephrologists: A Feasibility Study in Alberta, Canada.

BACKGROUND: Demand for virtual visits (an online synchronous medical appointment between a health care provider and patient) is increasing due to the COVID-19 pandemic. There may be additional benefits of virtual visits as they appear to be convenient and potentially cost-saving to patients. People receiving maintenance hemodialysis require ongoing care from their nephrologist and may benefit from virtual visits; however, the optimal model for a virtual kidney clinic is unknown. OBJECTIVE: To codesign and assess the feasibility of a virtual (video) kidney clinic model with clinic staff, nephrologists, and patients receiving maintenance hemodialysis, to be used for routine follow-up visits. DESIGN: Mixed-methods study. SETTING: Two main kidney clinics in central Calgary, Alberta. PARTICIPANTS: Adults with kidney failure receiving maintenance hemodialysis, nephrologists, and clinic staff. METHODS: First, we individually interviewed clinic staff and nephrologists to assess the needs of the clinic to deliver virtual visits. Then, we used participant observation with patients and nephrologists to codesign the virtual visit model. Finally, we used structured surveys to evaluate the patients' and nephrologists' experiences when using the virtual model. RESULTS: Eight video visits (8 patients; 6 nephrologists) were scheduled between October 2019 and February 2020 and 7 were successfully completed. Among completed visits, all participants reported high satisfaction with the service, were willing to use it again, and would recommend it to others. Three main themes were identified with respect to factors influencing visit success: IT infrastructure, administration, and process. LIMITATIONS: Patients received training on how to use the videoconference platform by the PhD student, whom also set up the technical components of the visit for the nephrologist. This may have overestimated the feasibility of virtual visits if this level of support is not available in future. Second, interviews were not audio-recorded and thematic analysis relied on field notes. CONCLUSIONS: Video visits for routine follow-up care between people receiving hemodialysis and nephrologists were acceptable to patients and nephrologists. Video visits appear to be feasible if clinics are equipped with appropriate equipment and IT infrastructure, physicians are remunerated appropriately, and patients receive training on how to use software as needed.

CONTEXTE: La demande pour des consultations virtuelles (rendez-vous médical par vidéoconférence entre un patient et son fournisseur de soins) augmente en raison de la pandémie de COVID-19. Ces consultations pourraient présenter des avantages pour les patients, notamment en raison de leur côté pratique et des économies qui en résultent. Les patients recevant des traitements d'entretien par hémodialyse nécessitent un suivi continu de la part de leur néphrologue et pourraient tirer profit de ce type de consultation. On ignore toutefois quel modèle de clinique de néphrologie virtuelle serait optimal. OBJECTIF: Concevoir, conjointement avec le personnel des cliniques, les néphrologues et les patients recevant des traitements d'hémodialyse, un modèle de consultation virtuelle (vidéoconférence) pour les visites de suivi de routine, et en évaluer la faisabilité. TYPE D'ÉTUDE: Étude à méthodes mixtes. CADRE: Les deux principales cliniques de néphrologie du centre de Calgary (Alberta). SUJETS: Des adultes atteints d'insuffisance rénale et recevant des traitements d'hémodialyse, des néphrologues et le personnel des cliniques concernées. MÉTHODOLOGIE: En premier lieu, le personnel de la clinique et les néphrologues ont été interrogés individuellement afin d'évaluer les besoins de la clinique en matière de consultations virtuelles. Les observations des participants ont ensuite servi à la conception conjointe du modèle de consultation virtuelle avec les patients et les néphrologues. Enfin, des questionnaires structurés ont servi à évaluer les expériences des patients et des néphrologues lors de l'utilisation du modèle. RÉSULTATS: Huit consultations virtuelles (8 patients; 6 néphrologues) étaient prévues entre octobre 2019 et février 2020, dont sept ont été réalisées avec succès. Tous les participants aux séances complétées se sont dits très satisfaits du modèle et ont mentionné qu'ils seraient prêts à l'utiliser à nouveau et qu'ils le recommanderaient à d'autres. Trois principaux thèmes ont été dégagés quant aux facteurs influençant le succès de la consultation ont été dégagés: l'infrastructure, l'administration et le processus informatiques. LIMITES: Les patients avaient reçu une formation sur l'utilisation de la plateforme de vidéoconférence de la part d'un étudiant au doctorat, lequel a également mis en place les composantes techniques de la consultation pour le néphrologue. La faisabilité des consultations virtuelles pourrait être surestimée si ce niveau de soutien n'est pas offert à l'avenir. Deuxièmement, les entrevues n'étaient pas enregistrées sur des fichiers audio, l'analyse thématique reposait donc sur des notes d'observation. CONCLUSION: Les patients hémodialysés et les néphrologues ont jugé acceptable ce modèle de consultations virtuelles pour les suivis de routine. Les consultations par vidéoconférence sont réalisables si les cliniques sont dotées de l'équipement et de l'infrastructure informatiques appropriés, si les médecins sont rémunérés adéquatement et si les patients reçoivent une formation sur l'utilisation du logiciel, au besoin.

Availability, Accessibility, and Quality of Conservative Kidney Management Worldwide.

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

A cluster randomized controlled trial for the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY): a study protocol.

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.

Return on investment of the diabetes foot care clinical pathway implementation in Alberta, Canada.

AIMS: Based on best practices, the diabetes foot care clinical pathway (DFCCP) has been developed and implemented in several clinics in Alberta, Canada. We performed a return on investment (ROI) analysis of this implementation. METHODS: We used a cohort design comparing both cost and return (in terms of reduced health services utilization, HSU) between diabetes patients who were exposed and who were unexposed, to the intervention. We used a difference-in-difference approach and a propensity-score-matching technique to minimize biases due to differences in demographic and clinical characteristics between two cohorts. We used a 1-year time-horizon and converted all costs/savings to 2019 Canadian dollars (1 CA$ ~= 0.75 US$). RESULTS: The intervention helped avoid $3500 in costs of HSU per patient-year. Subtracting the intervention cost of $500, the net benefit of intervention was $3000 (ranged $2400-$3700) per patient-year. The ROI ratio was estimated at 7.4 (ranged 6.1 to 8.8) meaning that every invested $1 returned $7.4 (ranged $6.1-$8.8) for the health system. The probability of intervention being cost-saving ranged from 99.5-100%. CONCLUSIONS: The implementation of DFCCP in Alberta is cost-saving. A continuation of the pathway implementation at studied clinics and a spread to other clinics are recommended.

Association of Initiation of Dialysis With Hospital Length of Stay and Intensity of Care in Older Adults With Kidney Failure.

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

An Exploratory Study of Person-Centered Care in a Large Urban Hemodialysis Program in Canada Using a Qualitative Case-Study Methodology.

BACKGROUND: Person-centered care (PCC) can benefit patients, clinical staff, and health care organizations, but has not yet been widely adopted into practice. Hemodialysis is a unique care environment in which clinical staff can be involved with patients for protracted periods of time each week and often over a number of years. While kidney care is arguably more holistic than other chronic condition management programs, most patients requiring hemodialysis do not receive care that is optimally person-centered. OBJECTIVE: The purpose of this research was to explore how care is experienced and provided in a large urban hemodialysis program in western Canada in relation to key principles of PCC. In addition, we wanted to understand what factors at an individual, unit, and organizational level facilitate or inhibit PCC in this environment. METHODS: We used a qualitative case-study approach to explore multiple perspectives of care provision using a number of data sources including semi-structured interviews with patients, family members, clinical staff, and administrative staff, as well as observing patterns of clinical practice in local hemodialysis units. FINDINGS: In our study of a single hemodialysis program, we found limited evidence of PCC. Overall, patients reported that their care was good and they had positive relationships with their care team. However, they did not feel involved in decisions regarding their care or consider it to be individualized. In general, providers acknowledged the potential benefits of PCC but were constrained in their practice by a number of factors, including individual perceptions of their role, a prescriptive care environment, and an organizational focus on managing demand. CONCLUSIONS: Evidence of PCC within hemodialysis services was limited, with a number of individual, unit level, and organizational barriers mitigating against its adoption and spread.

CONTEXTE: Les soins axés sur le patient sont bénéfiques pour les patients eux-mêmes, mais également pour le personnel clinique et les établissements de santé. Néanmoins, ils demeurent peu adoptés en pratique. L'hémodialyse constitue un contexte de soins unique où le personnel clinique est impliqué auprès des patients pendant de longues périodes chaque semaine et souvent, pendant plusieurs années. Les soins en néphrologie sont probablement plus holistiques que les autres programs de prise en charge des maladies chroniques, mais la plupart des patients qui nécessitent des traitements d'hémodialyse ne reçoivent toujours pas des soins individualisés. OBJECTIF: Cette étude visait à examiner, du point de vue des principes clés de la prestation de soins individualisés, la façon dont les soins sont prodigués et reçus dans un vaste program d'hémodialyse en milieu urbain dans l'Ouest canadien. Nous souhaitions également connaître les facteurs au niveau de l'individu, de l'unité de soins et de l'établissement de santé, qui facilitent ou entravent la pratique de soins davantage axés sur le patient dans un tel environnement. MÉTHODOLOGIE: Nous avons adopté une approche des études de cas qualitative pour examiner un certain nombre de modèles de prestation de soins en utilisant plusieurs sources de données, notamment des entretiens semi-structurés avec les patients, leurs proches et des membres du personnel clinique et administratif, et l'observation des modèles de pratique clinique dans les unités locales d'hémodialyse. RÉSULTATS: Dans notre étude, menée dans un seul program d'hémodialyse, nous avons recueilli peu de preuves d'une prestation de soins personnalisée. Dans l'ensemble, les patients ont indiqué recevoir de bons soins et entretenir de bonnes relations avec le personnel soignant; tout en ajoutant ne pas se sentir impliqués dans les décisions relatives à leurs soins, ni considérer que ces derniers étaient personnalisés. De leur côté, les fournisseurs de soins reconnaissaient les avantages potentiels des soins personnalisés, mais se disaient limités dans leur pratique par un certain nombre de facteurs, notamment la perception individuelle de leur rôle, un environnement de soins normatif et une orientation organisationnelle axée sur la gestion de la demande. CONCLUSION: Les données probantes attestant d'un program de soins individualisé dans le contexte de l'hémodialyse se sont avérées limitées; et un certain nombre d'obstacles, tant sur le plan individuel, de l'unité de soins que de l'établissement de santé, ont atténué l'adoption et la propagation de ces soins.

Protocol for a pilot randomised controlled trial of an educational programme for adults on chronic haemodialysis with fatigue (Fatigue-HD).

INTRODUCTION: Fatigue is a pervasive symptom of end-stage renal disease (ESRD) that is associated with low quality of life, disability and mortality, and has been identified as a top research priority by patients. We developed a personalised, web-supported educational programme (the Personal Energy Planning (PEP) programme) to teach people with ESRD to use energy management to manage fatigue. Preliminary studies have demonstrated positive effects on fatigue and life participation (ie, the ability to participate in valued day-to-day activities), which justifies the need for a randomised controlled trial (RCT) to better understand the efficacy of the programme. The objectives of the pilot RCT are to estimate RCT eligibility, recruitment and attrition rates, to inform the primary outcome measure and sample size for the RCT and to evaluate treatment fidelity among programme administrators. METHODS AND ANALYSIS: A parallel-arm, 1:1 pilot RCT will be conducted at four in-centre haemodialysis units in Calgary, Alberta, Canada. People on haemodialysis who report moderate or severe fatigue on the Fatigue Severity Scale, and meet other study eligibility criteria, will be invited to participate. Consenting participants will be randomised to undergo the 7-9 week 'PEP' programme or an active control, and followed for 12 weeks after the programme concludes. Information on eligibility, recruitment and attrition rates will be collected, and questionnaires assessing fatigue and life participation will be administered preintervention, midintervention, immediately postintervention and 12 weeks postintervention. Analyses will include calculation of eligibility, recruitment and attrition rates; power considerations for the full-scale RCT and evaluation of treatment fidelity of programme administrators. ETHICS AND DISSEMINATION: Risks associated with this study are minor. Patients may experience emotional discomfort while filling out study questionnaires. They will be advised to skip any questions that make them uncomfortable. Potential benefits of participating include any benefit derived from the study intervention, and contributing to research that may benefit people with kidney disease in the future. Trial results will be disseminated via publication in an academic journal and presentation at academic conferences. The study has been approved by the Conjoint Health Research Ethics Board at the University of Calgary (ID #18-1657).

Patient and provider experience and perspectives of a risk-based approach to multidisciplinary chronic kidney disease care: a mixed methods study.

BACKGROUND: The Kidney Failure Risk Equation (KFRE) predicts risk of progression to kidney failure and is used to guide clinical decisions for patients with chronic kidney disease (CKD). METHODS: The KFRE was implemented to guide access to multidisciplinary care for CKD patients in Alberta, Canada, based on their 2-year risk of kidney failure. We used a mixed methods approach to investigate patients' and providers' perspectives and experiences 1 year following KFRE implementation. We conducted post-implementation interviews with multidisciplinary clinic providers and with low-risk patients who transitioned from multidisciplinary to general nephrology care. We also administered pre- and post-implementation patient care experience surveys, targeting both low-risk patients discharged to general nephrology and high-risk patients who remained in the multidisciplinary clinic, and provider job satisfaction surveys. RESULTS: Twenty-seven interviews were conducted (9 patients, 1 family member, 17 providers). Five categories were identified among patients and providers: targeted care; access to resources outside the multidisciplinary clinics; self-efficacy; patient reassurance and reduced stress; and transition process for low-risk patients Two additional categories were identified among providers only: anticipated concerns and job satisfaction. Patients and providers reported that the risk-based approach allowed the clinic to target care to those most likely to experience kidney failure and most likely to benefit from multidisciplinary care. While some participants indicated the risk-based model enhanced the sustainability of the clinics, others expressed concern that care for low-risk patients discharged from multidisciplinary care, or those now considered ineligible, may be inadequate. Overall, 413 patients completed the care experience survey and 73 providers completed the workplace satisfaction survey. The majority of patients were satisfied with their care in both periods with no overall differences. When considering the responses "Always" and "Often" together versus not, there were statistically significant improvements in domains of access to care, caring staff, and safety of care. There were no differences in healthcare providers' job satisfaction following KFRE implementation. CONCLUSIONS: Patients and healthcare providers reported that the risk-based approach improved the focus of the multidisciplinary CKD clinics by targeting patients at highest risk, with survey results suggesting no difference in patient care experience or healthcare provider job satisfaction.

Identification and Prioritization of Quality Indicators for Conservative Kidney Management.

RATIONALE & OBJECTIVE: Conservative kidney management is holistic patient-centered care for patients with kidney failure that focuses on delaying the progression of kidney disease and symptom management, without the provision of renal replacement therapy. Currently there is no consensus as to what constitutes high-quality conservative kidney management. We aimed to develop a set of quality indicators for the conservative management of kidney failure. STUDY DESIGN: Nominal group technique and Delphi survey process. SETTING & PARTICIPANTS: 16 patients and caregivers from Calgary, Canada, participated in 2 nominal group meetings. 91 multidisciplinary health care professionals from 10 countries took part in a Delphi process. ANALYTICAL APPROACH: Nominal group technique study of patients and caregivers was used to identify and prioritize a list of quality indicators. A 4-round Delphi process with health care professionals was used to rate the quality indicators until consensus was reached (defined as a mean rating on the Likert scale ≥7.0 and percent agreement >75%). Quality indicators that met criteria for consensus inclusion in the Delphi survey were ranked, and comparisons were made with nominal group priorities. RESULTS: 99 quality indicators met consensus criteria for inclusion. The most highly rated quality indicator in the Delphi process was the "percentage of patients that die in the place they desire." There was significant discordance between priorities of the nominal groups with that of the Delphi survey, with only 1 quality indicator being shared on each groups' top 10 list of quality indicators. LIMITATIONS: Participants were largely from high-income English-speaking countries, and most already had structured conservative kidney management programs in place, all potentially limiting generalizability. CONCLUSIONS: Quality of conservative kidney management care is important to patients, caregivers, and health care professionals. However, discordant quality indicator priorities between groups suggested that care providers delivering conservative kidney management may not prioritize what is most important to those receiving this care. Conservative kidney management programs and health care providers can improve the applicability of this consensus-based quality indicator list to their program by further developing and evaluating it for use in their program.

A comparison of temporal artery thermometers with internal blood monitors to measure body temperature during hemodialysis.

BACKGROUND: Thermometers that measure core (internal) body temperature are the gold standard for monitoring temperature. Despite that most modern hemodialysis machines are equipped with an internal blood monitor that measures core body temperature, current practice is to use peripheral thermometers. A better understanding of how peripheral thermometers compare with the dialysis machine thermometer may help guide practice. METHODS: The study followed a prospective cross-sectional design. Hemodialysis patients were recruited from 2 sites in Calgary, Alberta (April - June 2017). Body temperatures were obtained from peripheral (temporal artery) and dialysis machine thermometers concurrently. Paired t-tests, Bland-Altman plots, and quantile-quantile plots were used to compare measurements from the two devices and to explore potential factors affecting temperature in hemodialysis patients. RESULTS: The mean body temperature of 94 hemodialysis patients measured using the temporal artery thermometer (36.7 °C) was significantly different than the dialysis machine thermometer (36.4 °C); p < 0.001. The mean difference (0.27 °C) appeared to be consistent across average temperature (range: 35.8-37.3 °C). CONCLUSIONS: Temperature measured by the temporal artery thermometer was statistically and clinically higher than that measured by the dialysis machine thermometer. Using the dialysis machine to monitor body temperature may result in more accurate readings and is likely to reduce the purchasing and maintenance costs associated with manual temperature readings, as well as easing the workload for dialysis staff.

Survival among older adults with kidney failure is better in the first three years with chronic dialysis treatment than not.

Comparisons of survival between dialysis and nondialysis care for older adults with kidney failure have been limited to those managed by nephrologists, and are vulnerable to lead and immortal time biases. So we compared time to all-cause mortality among older adults with kidney failure treated vs. not treated with chronic dialysis. Our retrospective cohort study used linked administrative and laboratory data to identify adults aged 65 or more years of age in Alberta, Canada, with kidney failure (2002-2012), defined by two or more consecutive outpatient estimated glomerular filtration rates less than 10 mL/min/1.73m2, spanning 90 or more days. We used marginal structural Cox models to assess the association between receipt of dialysis and all-cause mortality by allowing control for both time-varying and baseline confounders. Overall, 838 patients met inclusion criteria (mean age 79.1; 48.6% male; mean estimated glomerular filtration rate 7.8 mL/min/1.73m2). Dialysis treatment (vs. no dialysis) was associated with a significantly lower risk of death for the first three years of follow-up (hazard ratio 0.59 [95% confidence interval 0.46-0.77]), but not thereafter (1.22 [0.69-2.17]). However, dialysis was associated with a significantly higher risk of hospitalization (1.40 [1.16-1.69]). Thus, among older adults with kidney failure, treatment with dialysis was associated with longer survival up to three years after reaching kidney failure, though with a higher risk of hospital admissions. These findings may assist shared decision-making about treatment of kidney failure.

Perceived Benefits and Challenges of a Risk-Based Approach to Multidisciplinary Chronic Kidney Disease Care: A Qualitative Descriptive Study.

BACKGROUND: The kidney failure risk equation (KFRE) provides an estimate of risk of progression to kidney failure, and may guide clinical care. OBJECTIVE: We aimed to describe patient, family, and health care provider's perspectives of the perceived benefits and challenges of using a risk-based approach to guide care delivery for patients with advanced chronic kidney disease (CKD), and refine implementation based on their input. METHODS: We used qualitative methodology to explore perceived benefits and challenges of implementing a risk-based approach (using the KFRE) to determine eligibility for multidisciplinary CKD care in Southern Alberta. We obtained perspectives from patients and families through focus groups, as well as input from health care providers through interviews and open-ended responses from an online survey. Twelve patients/family members participated in 2 focus groups, 16 health care providers participated in an interview, and 40 health care providers responded to the survey. RESULTS: Overall, participants felt that a KFRE-based approach had the potential to improve efficiency of the clinics by targeting care to patients at highest risk of kidney failure; however, they also expressed concerns about the impact of loss of services for lower risk individuals. Participants also articulated concerns about a perceived lack of capacity for adequate CKD patient care in the community. Our implementation strategy was modified as a result of participants' feedback. CONCLUSIONS: We identified benefits and challenges to implementation of a risk-based approach to guide care of patients with advanced CKD. Based on these results, our implementation strategy has been modified by removing the category of referral back to primary care alone, and instead having that decision made jointly by nephrologists and patients among low-risk patients.

CONTEXTE: La Kidney Failure Risk equation (KFRE), l'équation qui mesure le risque d'évolution vers la défaillance rénale, est susceptible d'orienter les soins prodigués en néphrologie. OBJECTIFS DE L'ÉTUDE: Nous souhaitions savoir comment les patients, leurs proches et leurs fournisseurs de soins percevaient le recours à une approche de prédiction du risque pour répartir les patients atteints d'insuffisance rénale chronique (IRC) dans le système de soins. Plus précisément, nous nous sommes intéressés aux avantages et aux défis perçus face à une telle approche, et les commentaires recueillis se destinaient à en raffiner la mise en œuvre. MÉTHODOLOGIE: Nous avons utilisé une méthodologie qualitative pour étudier les avantages et les défis perçus de la KFRE comme outil d'évaluation de l'admissibilité de patients sud-albertains atteints d'IRC à la prise en charge par une équipe multidisciplinaire. Les perceptions des patients et de leurs proches ont été recueillies lors de groupes de discussion; les fournisseurs de soins ont quant à eux donné leur avis au moyen d'entrevues et d'un sondage en ligne à questions ouvertes. Au total, douze patients et membres de leurs familles ont participé aux groupes de discussion, 16 fournisseurs des soins ont été interviewés et 40 ont répondu au sondage en ligne. RÉSULTATS: Dans l'ensemble, les participants étaient d'avis que la KFRE avait le potentiel d'améliorer l'efficience des cliniques en néphrologie en canalisant les soins vers les patients à risque élevé de défaillance rénale. Les participants se sont toutefois dits préoccupés par les éventuelles conséquences d'une perte de services pour les patients à moindre risque. Ils appréhendaient également une capacité insuffisante du milieu communautaire à prendre en charge les patients atteints d'IRC. Nous avons modifié notre stratégie de mise en œuvre suivant les commentaires recueillis. CONCLUSION: Cette étude nous a permis de recenser les avantages et les défis perçus face à l'application d'une approche fondée sur la KFRE pour prodiguer des soins aux patients atteints d'IRC à un stade avancé. À la lumière des résultats, la stratégie de mise en œuvre a été modifiée. Nous avons notamment supprimé la catégorie de renvoi automatique aux seuls soins primaires pour faire en sorte que, dans le cas de patients à faible risque, le mode de prise en charge soit conjointement déterminé par le néphrologue et le patient.

Impact of Telehealth Interventions on Processes and Quality of Care for Patients With ESRD.

Caring for patients with end-stage renal disease (ESRD) requiring dialysis is intensive and expensive. Telehealth may improve the access and efficiency of ESRD care. For this perspective, we systematically reviewed studies that examined the effectiveness of telehealth versus or in addition to usual care for ESRD management. 10 studies were identified, including 7 randomized trials and 3 cohort studies. Study populations, modes of delivery (including telephone, telemetry, or videoconferencing), and the outcomes evaluated varied substantially between studies. Two studies examined telehealth interventions versus standard ESRD care and demonstrated mixed results on processes of care, no differences in laboratory surrogate markers of ESRD care, and reduced or similar rates of hospitalization. Eight studies evaluated the addition of telehealth to usual care and demonstrated no significant improvements in processes of care or surrogate laboratory measures, variable impacts on hospitalization rates, and mixed impacts on some domains of quality of life, including improvement in mental health. Although potential benefits of telehealth in ESRD care have been reported, optimal designs for delivery and elements of care that may be improved through telehealth remain uncertain.

Implementation and Evaluation of a Risk-Based Approach to Guide Chronic Kidney Disease Care: Protocol for a Multiphase Mixed-Methods Study.

BACKGROUND: Risk prediction tools are used in a variety of clinical settings to guide patient care, although their use in chronic kidney disease (CKD) care is limited. OBJECTIVES: To assess the association of a risk-based model of CKD care on patient care, satisfaction, outcomes, and cost. DESIGN: Mixed-methods with a pre-post design. SETTING: We will use mixed-methods and a pre-post design to evaluate use of the Kidney Failure Risk Equation (KFRE) to guide CKD care. The KFRE will be applied to patients currently followed in nephrology multidisciplinary CKD clinics in Alberta, as well as to new patients being considered for multidisciplinary care. PATIENTS: Patients with a 2-year risk of kidney failure ≥10% or estimated glomerular filtration rate (eGFR) ≤15 mL/min/1.73 m2 will be recommended care by a multidisciplinary team coordinated by a nurse clinician and nephrologist, with access to other multidisciplinary resources including dietitians, pharmacists, and social workers as required. MEASUREMENTS/METHODS: Focus groups and interviews will be conducted to qualitatively describe patient and provider perspectives of potential barriers and facilitators to implementation of the risk-based approach to CKD care. Patient and provider surveys will also be used to quantify patient and provider satisfaction before and after the intervention. Finally, administrative data will be used to evaluate the association between the risk-based approach to care and outcomes including health care resource use, frequency of testing, modality choice, and death. CONCLUSIONS: Use of a risk-based model of care has the potential to increase use of optimal treatments such as the use of home dialysis and preemptive kidney transplantation, while reducing costs and poor outcomes related to processes of care such as unnecessary laboratory testing; however, there is also potential for unintended consequences. Our mixed-methods approach will integrate perceptions and needs from key stakeholders (including patients with CKD, their families, and their providers) to guide implementation and ensure appropriate modifications.

CONTEXTE: Les outils de prévision des risques sont employés dans différents contextes cliniques pour orienter les soins prodigués aux patients. Néanmoins, leur usage dans le contexte de l'insuffisance rénale chronique (IRC) demeure limité. OBJECTIF: Évaluer, dans le contexte de l'IRC, l'influence qu'un modèle de soins intégrant la prévision des risques pourrait avoir sur les soins prodigués aux patients, sur leur satisfaction, sur l'évolution de la maladie et sur les coûts de santé. TYPE D'ÉTUDE: Méthode mixte avec évaluation avant et après l'intervention. CADRE DE L'ÉTUDE: À l'aide d'une méthode mixte et d'une évaluation avant et après l'intervention, nous mesurerons l'emploi de l'équation prédictive du risque d'évolution vers l'insuffisance rénale, la Kidney Failure Risk Equation (KFRE), comme guide de soins en IRC. La KFRE sera appliquée aux patients suivis actuellement dans les cliniques multidisciplinaires de néphrologie en Alberta, de même qu'à tous les nouveaux patients qui seront aiguillés vers les soins multidisciplinaires. PATIENTS: Deux groupes de patients seront aiguillés vers une équipe de soins multidisciplinaire coordonnée par une infirmière clinicienne et un néphrologue, soit les patients présentant un risque égal ou supérieur à 10 % de progresser vers l'insuffisance rénale d'ici deux ans, et ceux dont le débit de filtration glomérulaire estimé (DFGe) est de 15 ml/min/1,73 m2 ou moins. Ces patients auront également accès aux autres ressources de la clinique si nécessaire, notamment des nutritionnistes, des pharmaciens et des travailleurs sociaux. MÉTHODOLOGIE: Des groupes de discussion seront formés et des entretiens individuels seront menés pour sonder le point de vue des patients et des fournisseurs de soins sur les possibles obstacles et facilitateurs à l'adoption d'une approche de soins axée sur la prévision du risque. Ces sondages serviront également à évaluer la satisfaction des participants avant et après l'intervention. Les données administratives seront employées pour évaluer l'association entre une approche de soins axée sur la prévision du risque et les issues en lien avec l'intervention, notamment l'utilisation des ressources en santé, la fréquence des tests, le choix de modalité et le décès. CONCLUSION: L'emploi d'un modèle de soins intégrant la prévision du risque a le potentiel d'accroître le recours aux traitements optimaux tels que la dialyse à domicile et la greffe rénale préventive. Il permettra également de réduire les coûts de santé et les issues défavorables comme les tests de laboratoires inutiles. Par contre, ce modèle comporte aussi un risque de conséquences imprévues. Notre approche par méthodes mixtes intègrera les avis et les besoins des personnes impliquées (les patients atteints d'IRC, leurs familles et le personnel soignant) afin d'orienter la mise en œuvre et pour s'assurer d'apporter les modifications appropriées.

A Description of Advanced Chronic Kidney Disease Patients in a Major Urban Center Receiving Conservative Care.

BACKGROUND: Conservative/palliative (nondialysis) management is an option for some individuals for treatment of stage 5 chronic kidney disease (CKD). Little is known about these individuals treated with conservative care in the Canadian setting. OBJECTIVE: To describe the characteristics of patients treated with conservative care for category G5 non-dialysis CKD in a Canadian context. DESIGN: Retrospective chart review. SETTING: Urban nephrology center. PATIENTS: Patients with G5 non-dialysis CKD (estimated glomerular filtration rate <15 mL/min/1.73 m2). MEASUREMENTS: Baseline patient demographic and clinical characteristics of conservative care follow-up, advanced care planning, and death. METHODS: We undertook a descriptive analysis of individuals enrolled in a conservative care program between January 1, 2009, and June 30, 2015. RESULTS: One hundred fifty-four patients were enrolled in the conservative care program. The mean age and standard deviation was 81.4 ± 9.0 years. The mean modified Charlson Comorbidity Index score was 3.4 ± 2.8. The median duration of conservative care participation was 11.5 months (interquartile range: 4-25). Six (3.9%) patients changed their modality to dialysis. One hundred three (66.9%) patients died during the study period. Within the deceased cohort, most (88.2%) patients completed at least some advanced care planning before death, and most (81.7%) of them died at their preferred place. Twenty-seven (26.7%) individuals died in hospital. LIMITATIONS: Single-center study with biases inherent to a retrospective study. Generalizability to non-Canadian settings may be limited. CONCLUSIONS: We found that individuals who chose conservative care were very old and did not have high levels of comorbidity. Few individuals who chose conservative care changed modality and accepted dialysis. The proportions of engagement in advanced care planning and of death in place of choice were high in this population. Death in hospital was uncommon in this population.

CONTEXTE: Les traitements conservateurs ou soins palliatifs (sans dialyse) constituent une option thérapeutique pour certaines personnes atteintes 'd'insuffisance rénale chronique non-dialyse de catégorie 5 (IRC-ND). Toutefois, nous en savons peu au sujet des personnes inscrites à un programme de traitement conservateur dans le contexte canadien. OBJECTIF DE L'ÉTUDE: Faire le portrait des patients atteints d'IRC-ND G5, sous traitement conservateur dans un contexte canadien. TYPE D'ÉTUDE: Examen rétrospectif des dossiers médicaux. CADRE DE L'ÉTUDE: Un centre de néphrologie en milieu urbain. PATIENTS: Des patients atteints d'IRC-ND G5 (débit de filtration glomérulaire estimé à moins de 15 ml/min/1,73 m2). MESURES: Les données démographiques initiales des patients, de même que les données cliniques de suivi du traitement conservateur, de planification des soins avancés et du décès. MÉTHODOLOGIE: Nous avons entrepris l'analyse descriptive des individus inscrits à un programme de traitement conservateur pour la période s'échelonnant du 1er janvier 2009 au 30 juin 2015. RÉSULTATS: Au total, 154 patients ont été inscrits dans un programme de traitement conservateur au cours de la période étudiée. L'âge moyen des patients était de 81,4 ans avec un écart-type de ± 9,0 ans. Le score moyen à l'index de comorbidité de Charlson modifié était de 3,4 ± 2,8 et la durée médiane de participation à un programme de traitement conservateur était de 11,5 mois (écart interquartile de 4,25). Au cours de la période étudiée, six patients (3,9%) sont passés du traitement conservateur à la dialyse et 103 patients (66,9%) sont décédés. Au sein de la cohorte de patients décédés, la grande majorité (88,2%) avait complété une partie des soins avancés planifiés avant le décès. De cette même cohorte, la plupart (81,7%) sont décédés où ils l'avaient choisi alors que 27 personnes (26,7%) sont décédées à l'hôpital. LIMITES DE L'ÉTUDE: L'étude s'est tenue au sein d'un seul centre hospitalier et comporte des biais inhérents attribuables à son modèle rétrospectif. De plus, la généralisation des résultats à des paramètres non canadiens peut être limitée. CONCLUSIONS: Nous avons constaté que les personnes qui avaient opté pour un traitement conservateur étaient très âgées et présentaient peu de comorbidités. Au cours de la période étudiée, quelques patients qui avaient choisi un traitement conservateur ont changé de modalité et accepté de passer à la dialyse. Nous avons également observé que l'engagement dans la planification des soins avancés et dans le choix de l'endroit où mourir était élevé au sein de cette population, alors que le décès à l'hôpital a été plutôt rare.