Priorities for peer support delivery among adults living with chronic kidney disease: a patient-oriented consensus workshop.

BACKGROUND: Peer support can address the informational and emotional needs of people living with chronic kidney disease (CKD) and enable self-management. We aimed to identify preferences and priorities for content, format and processes of peer support delivery for patients with non-dialysis CKD and their loved ones. METHODS: Using a patient-oriented research approach, we conducted a half-day, virtual consensus workshop with stakeholder participants from across Canada, including patients, caregivers, peer mentors and clinicians. Using personas (fictional characters), participants discussed and voted on preferences for delivery of peer support across format, content and process categories. We analyzed transcripts from small- and large-group discussions inductively using content analysis. RESULTS: Twenty-one stakeholders, including 9 patients and 4 caregivers, participated in the workshop. In the voting exercise on format, participants prioritized peer mentor matching, programming for both patients and caregivers, and flexible scheduling. For content, participants prioritized informational and emotional support focus, and for process, they prioritized leveraging kidney care programs and alternative sources (e.g., social media) for promotion and referral. Analysis of workshop transcripts complemented prioritization results and emphasized tailoring of peer support delivery to accommodate the diversity of people living with CKD and their support needs. This concept was elaborated in 3 themes, namely alignment of program features with needs, inclusive peer support options and multiple access points. INTERPRETATION: We identified preferences for peer support delivery for people living with CKD and underscore the importance of tailored, flexible programming in this context. Findings could be used to develop, adapt or study CKD-focused peer support interventions.

Knowledge Translation in Glomerulonephritis: Successes in Translational Research From the Bench to Bedside.

Purpose of review: Glomerulonephritis refers to a rare group of diseases characterized by glomerular inflammation, which collectively are a common cause of kidney failure. Until recently, there was a lack of high-quality clinical trials to inform the care of patients with glomerulonephritides. We identified examples of successful translational research spanning from basic science to clinical applications, and highlight gaps in implementation science. Sources of information: The focus of our review was derived from discussions between health care professionals, researchers, and patient partners. We also performed literature searches pertaining to the treatment of glomerulonephritis in PubMed and Google Scholar. Methods: Examples of successful knowledge translation were generated through review of new evidence in the past 5 years and by iterative discussions by the authors. We then conducted a narrative review of several themes related to knowledge translation in glomerulonephritis. This was complemented by an interview with a patient partner to provide an example of a patient's perspective living with glomerulonephritis. Key findings: We summarized selected recent advances in glomerulonephritis and its knowledge translation in the following domains: (1) identification of auto-antibodies in membranous nephropathy and minimal change disease; (2) clinical trials of novel targeted therapies for IgA nephropathy and lupus nephritis, which have led to approval of new treatments; (3) developments in research networks and clinical trials in glomerulonephritis; (4) recognition of the importance in developing standardized patient reported outcome measures in clinical trials; and (5) barriers in knowledge translation including access to medication. Limitations: A systematic search of the literature and formal assessment of quality of evidence were beyond the scope of this review.

Motif de la revue: La glomérulonéphrite désigne un groupe rare de maladies qui se caractérisent par une inflammation des glomérules. Collectivement, ces maladies sont une cause fréquente d'insuffisance rénale. Jusqu'à récemment, il n'y avait pas d'essais cliniques de grande qualité pour guider les soins des patients atteints de glomérulonéphrites. Nous avons répertorié des exemples de recherches translationnelles réussies, allant de la recherche fondamentale aux applications cliniques, et nous avons mis en évidence les lacunes dans l'application de la science. Sources: L'essentiel de notre examen est dérivé de discussions entre les professionnels de la santé, les chercheurs et les patients partenaires. Nous avons également procédé à une revue de la littérature sur PubMed et Google Scholar portant sur le traitement de la glomérulonéphrite. Méthodologie: Des exemples d'application réussie des connaissances ont été générés par un examen des récentes données probantes (cinq dernières années) et par des discussions itératives entre les auteurs. Nous avons ensuite procédé à une revue narrative de plusieurs thèmes liés à l'application des connaissances en contexte de glomérulonéphrite. Cette démarche a été complétée par une entrevue avec une patiente partenaire, afin de fournir le point de vue d'une personne vivant avec une glomérulonéphrite. Principaux résultats: Nous avons résumé certaines des avancées récentes de la recherche sur la glomérulonéphrite et l'application des connaissances dans les domaines suivants: 1) l'identification d'auto-anticorps dans la glomérulonéphrite membraneuse et la néphropathie à lésion glomérulaire minime; 2) les essais cliniques portant sur de nouvelles thérapies ciblées pour la néphropathie à IgA et la néphrite lupique qui ont conduit à l'approbation de nouveaux traitements; 3) les développements dans les réseaux de recherche et les essais cliniques sur la glomérulonéphrite; 4) la reconnaissance de l'importance d'élaborer des mesures normalisées pour les résultats rapportés par les patients dans les essais cliniques; 5) les obstacles à l'application des connaissances, y compris l'accès aux médicaments. Limites: Une recherche systématique de la documentation et l'évaluation officielle de la qualité des preuves dépassaient la portée de cet examen.

Perioperative management for people with kidney failure receiving dialysis: A scoping review.

BACKGROUND: People with kidney failure receiving dialysis (CKD-G5D) are more likely to undergo surgery and experience poorer postoperative outcomes than those without kidney failure. In this scoping review, we aimed to systematically identify and summarize perioperative strategies, protocols, pathways, and interventions that have been studied or implemented for people with CKD-G5D. METHODS: We searched MEDLINE, EMBASE, CINAHL Plus, Cochrane Database of Systematic Reviews, and Cochrane Controlled Trials registry (inception to February 2020), in addition to an extensive grey literature search, for sources that reported on a perioperative strategy to guide management for people with CKD-G5D. We summarized the overall study characteristics and perioperative management strategies and identified evidence gaps based on surgery type and perioperative domain. Publication trends over time were assessed, stratified by surgery type and study design. RESULTS: We included 183 studies; the most common study design was a randomized controlled trial (27%), with 67% of publications focused on either kidney transplantation or dialysis vascular access. Transplant-related studies often focused on fluid and volume management strategies and risk stratification, whereas dialysis vascular access studies focused most often on imaging. The number of publications increased over time, across all surgery types, though driven by non-randomized study designs. CONCLUSIONS: Despite many current gaps in perioperative research for patients with CKD-G5D, evidence generation supporting perioperative management is increasing, with recent growth driven primarily by non-randomized studies. Our review may inform organization of evidence-based strategies into perioperative care pathways where evidence is available while also highlighting gaps that future perioperative research can address.

Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology-Peritoneal Dialysis consensus workshop report.

BACKGROUND: Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. METHODS: Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. RESULTS: Fifty-six participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). CONCLUSIONS: There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.

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.

The Association Between Estimated Glomerular Filtration Rate and Hospitalization for Fatigue: A Population-Based Cohort Study.

BACKGROUND: 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. OBJECTIVE: To explore the association between estimated glomerular filtration rate (eGFR) and incidence of hospitalization for fatigue. DESIGN: Population-based retrospective cohort study using a provincial administrative dataset. SETTING: Alberta, Canada. PATIENTS: People above age 18 who had at least 1 outpatient serum creatinine measurement taken in Alberta between January 1, 2009, and December 31, 2016. MEASUREMENTS: 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. METHODS: 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/1.73m2). Estimates were stratified by age, and adjusted for age, sex, socioeconomic status, and comorbidity. RESULTS: The 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/1.73m2). LIMITATIONS: Fatigue hospitalization codes have not been validated; reference group limited to adults with at least 1 outpatient serum creatinine measurement; remaining potential for residual confounding. CONCLUSIONS: 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. TRIAL REGISTRATION: Not applicable (not a clinical trial).

CONTEXTE: 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. OBJECTIF: Examiner l'association entre le débit de filtration glomérulaire estimé (DFGe) et l'incidence d'hospitalization pour fatigue. TYPE D'ÉTUDE: Étude de cohorte rétrospective représentative d'une population et menée avec un ensemble de données administratives provinciales. CADRE: Alberta, Canada. SUJETS: 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. MESURES: 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. MÉTHODOLOGIE: 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 m 2) menait à une incidence accrue d'hospitalization pour fatigue. Les estimations ont été stratifiées selon l'âge et corrigées en fonction de l'âge, du sexe, du statut socio-économique et des comorbidités. RÉSULTATS: L'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 m2). LIMITES: Les 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. CONCLUSION: 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.

A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease (My Kidneys My Health): Co-Design and Usability Testing.

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.

Living with paradox: A qualitative study of colorectal cancer patients' experiences in managing their health after cancer treatment.

OBJECTIVES: Managing one's health after colorectal cancer may present specific challenges given long-term impacts to biopsychosocial functioning. Understanding experiences of managing one's health post-treatment is important to informing patient-centred supportive care. METHODS: A qualitative study with 19 patients who had completed treatment for colorectal cancer to explore the experience of managing one's health. Following Thorne's Interpretive Description, we conducted interviews using either focus groups or individual interviews. Transcribed data were analysed following Thorne's approach. Sociodemographic and clinical characteristics were also collected. RESULTS: The metaphor of living with paradox was the main theme characterising the experiences of managing one's health in the post-treatment period. Participants described the ambiguity of health, their need to accept the new normal, losing control and taking back control, experiencing positive and negative life changes, and the need to continually reframe their perspectives to focus on the positives. CONCLUSION: Our findings suggest that providing patient-centred care to colorectal cancer survivors post-treatment involves recognising their changing and sometimes conflicting experiences. Their ability to manage their health may fluctuate and their supportive care needs may not fit with a particular trajectory. Cancer care systems should strive for flexibility in the structure and timing of support available.

Longitudinal Changes in the Use of PD Assistance for Patients Maintained on Peritoneal Dialysis.

Background: Home dialysis therapies, such as peritoneal dialysis (PD), offer flexibility and improved well-being, particularly for older individuals. However, a substantial proportion require assistance with personal care and health care-related tasks. We hypothesized that patients and families would require less PD assistance as they became more familiar with PD-related tasks. The study objective was to assess whether the nature of, and need for, PD assistance decreased over time. Methods: Using a multicentered, prospective, observational study design, patients aged ≥50 years were recruited from those starting PD. Patients underwent formal evaluation using validated components of a Comprehensive Geriatric Assessment at baseline, and they were followed monthly and administered a questionnaire about the need for assistance with PD-related tasks. Results: A total of 111 patients (age 69±10 years, 68% men, and 56% diabetic) were followed for a total of 609 patient-months. Of those who needed help, 40% had help from a family member, and 33% were helped by nurses. Both the quantity and nature of help received by patients remained generally stable throughout follow-up and did not vary according to age, frailty, functional dependence, or cognitive impairment (P=0.93). The proportion of patients needing help varied widely across the 13 different tasks but appeared relatively stable across time. The paid-unpaid caregiver ratio for the different tasks did not change over time. Conclusions: Older patients initiating PD in the outpatient setting have a high need for assistance with PD-related tasks, which seems to persist over the initial 6-month period.

Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review.

BACKGROUND: Patients receiving peritoneal dialysis (PD) endure an ongoing regimen of daily fluid exchanges and are at risk of potentially life-threatening complications and debilitating symptoms that can limit their ability to participate in life activities. The aim of the study was to identify the characteristics, content and psychometric properties of measures for life participation used in research in PD. METHODS: We searched MEDLINE, Embase, PsychInfo, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and the Cochrane Central Register of Controlled Trials from inception to May 2020 for all studies that reported life participation in patients on PD. The characteristics, dimensions of life participation and psychometric properties of these measures were extracted and analyzed. RESULTS: Of the 301 studies included, 17 (6%) were randomized studies and 284 (94%) were nonrandomized studies. Forty-two different measures were used to assess life participation. Of these, 23 (55%) were used in only one study. Fifteen (36%) measures were specifically designed to assess life participation, while 27 (64%) measures assessed broader constructs, such as quality of life, but included questions on life participation. The 36-Item Short Form Health Survey and Kidney Disease Quality of Life Short Form were the most frequently used measures [122 (41%) and 86 (29%) studies, respectively]. Eight (19%) measures had validation data to support their use in patients on PD. CONCLUSIONS: The many measures currently used to assess life participation in patients receiving PD vary in their characteristics, content and validation. Further work to pilot and validate potential measures is required to establish a core patient-reported outcome measure to assess life participation in patients receiving PD.

Have We Just Scratched the Surface? A Narrative Review of Uremic Pruritus in 2020.

PURPOSE OF REVIEW: Uremic pruritus is a highly prevalent and debilitating symptom in patients with chronic kidney disease (CKD) and end-stage kidney disease (ESKD). The purpose of this review is to examine current evidence on the mechanisms and treatments of pruritus in CKD and highlight promising areas for future research. SOURCES OF INFORMATION: Published literature, including randomized controlled trials, cohort studies, case reports, and review articles, was searched for evidence pertaining to the pathophysiology and treatment of uremic pruritus. METHODS: A comprehensive narrative review was conducted to explore the molecular mechanisms underlying uremic pruritus, as well as the evidence (or lack thereof) supporting pharmacological and nonpharmacological treatments for uremic pruritus. The potential role of patient sex in the pathophysiology and management of uremic pruritus is also discussed. KEY FINDINGS: The pathophysiology of uremic pruritus involves a complex interplay of uremic toxins, systemic inflammation, mast cell activation, and imbalance of opioid receptors. Classic treatment strategies for uremic pruritus include optimization of dialysis parameters, amelioration of CKD-related mineral and bone disease, topical emollients and analgesics, antihistamines, the anticonvulsant medications gabapentin and pregabalin, and ultraviolet light B (UV-B) phototherapy. Strong data to support many of these classical treatments for uremic pruritus are limited. Newly evolving treatment approaches for uremic pruritus include opioid receptor modulators, neurokinin-1 inhibitors, and cannabinoids. Further studies regarding their efficacy, pharmacodynamics, and safety in the CKD and ESKD population are needed before these agents are accepted into widespread use. Additional nonpharmacological strategies aimed at treating uremic pruritus include psychotherapy, acupuncture, omega-3 fatty acids, and exercise. Finally, sex differences may exist regarding uremic pruritus, but studies directly addressing sex-specific mechanisms of uremic pruritus remain absent. LIMITATIONS: High-quality evidence in the management of uremic pruritus remains lacking. Most recommendations are based on expert opinion or studies involving small numbers of patients. In addition, our understanding of the pathophysiological mechanisms behind uremic pruritus is incomplete and continues to evolve over time. IMPLICATIONS: Uremic pruritus is a common symptom which reduces quality of life in CKD and ESKD. The identification of novel targeted treatment approaches may ease the burden of uremic pruritus in the future.

JUSTIFICATION: Le prurit urémique est un syndrome débilitant très prévalent chez les patients atteints d'insuffisance rénale chronique (IRC) et terminale (IRT). Cette revue examine les données probantes actuelles sur les mécanismes et le traitement de cette affection en contexte de néphropathie, et met en évidence les axes de recherche prometteurs. SOURCES: La littérature publiée, soit les essais contrôlés à répartition aléatoire, les études de cohorte, les rapports de cas et les articles de synthèse, a été consultée afin de répertorier les données probantes relatives à la physiopathologie et au traitement du prurit urémique. MÉTHODOLOGIE: Une revue narrative complète a été menée afin d'explorer les mécanismes moléculaires sous-tendant le prurit urémique et les données probantes (ou leur absence) appuyant ses traitements pharmacologiques et non pharmacologiques. Le rôle potentiellement joué par le sexe du patient dans la physiopathologie et la gestion de la maladie a également été discuté. PRINCIPAUX RÉSULTATS: La physiopathologie du prurit urémique implique l'interaction complexe des toxines urémiques, d'une inflammation systémique, de l'activation des mastocytes et d'un déséquilibre des récepteurs opioïdes. Les stratégies classiques de traitement comprennent l'optimisation des paramètres de dialyse, l'apaisement des troubles minéraux osseux liés à l'IRC, les émollients et analgésiques topiques, les antihistaminiques, les anticonvulsivants gabapentine et prégabaline et la photothérapie par UV-B. Les données robustes appuyant ces traitements classiques sont cependant limitées. Parmi les nouvelles approches de traitement, on compte les modulateurs de récepteurs opioïdes, les inhibiteurs de NK-1 et les cannabinoïdes. Des études supplémentaires se penchant sur leur efficacité, leur pharmacodynamie et leur innocuité chez les populations de patients atteints d'IRC et d'IRT sont toutefois nécessaires avant que ces agents ne soient approuvés pour un usage répandu. Les stratégies non pharmacologiques comptent la psychothérapie, l'acupuncture, la prise d'acides gras oméga 3 et l'exercice physique. Enfin, des différences liées au sexe du patient pourraient exister, mais les études portant directement sur les mécanismes sexospécifiques du prurit urémique manquent toujours. LIMITES: Les données probantes concernant la gestion du prurit urémique manquent toujours. La plupart des recommandations sont fondées sur l'avis d'experts ou sur des études portant sur de faibles échantillons. De plus, notre compréhension des mécanismes physiopathologiques causant le prurit urémique est incomplète et en constante évolution. CONCLUSION: Le prurit urémique est un symptôme courant chez les patients atteints d'IRC et d'IRT, dont il réduit la qualité de vie. L'identification de nouvelles approches de traitement ciblées pourrait alléger le fardeau associé au prurit urémique.

Perioperative management for people with chronic kidney disease receiving dialysis undergoing major surgery: a protocol for a scoping review.

INTRODUCTION: People with chronic kidney disease receiving dialysis (CKD G5D) have an increased risk of poor postoperative outcomes and a high incidence of major surgery. Despite the high burden of these combined risks, there is a paucity of evidence to support tailored perioperative strategies to manage this population. A comprehensive evidence synthesis would inform the management of these patients in the perioperative period and identify knowledge gaps. We describe a protocol for a scoping review of the literature to identify existing perioperative strategies, protocols, pathways and interventions for people with CKD G5D undergoing major surgery. METHODS AND ANALYSIS: We will conduct a scoping review in accordance with the Joanna Briggs Institute methodology and report per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. In February 2020, we will complete our search of MEDLINE, EMBASE, CINAHL Plus, Cochrane Database of Systematic Reviews, and Cochrane Controlled Trials Registry for published literature from inception to present. All study types are eligible for inclusion, without language restriction. Studies reporting a perioperative intervention in adult patients with CKD G5D are eligible for inclusion. Studies in prevalent kidney transplant patients or patients with acute kidney injury, and studies that report on surgical approaches without consideration of perioperative management strategies, will be excluded. Reviewers will independently assess abstracts for all identified studies in duplicate, and again at the full-text stage. Following published literature searches, a search of the grey literature will be developed. We will extract and narratively report study, participant and intervention details. This will include a summary table outlining the strategies employed, organised into post hoc developed perioperative domains. ETHICS AND DISSEMINATION: Ethical considerations do not apply to this scoping review. Findings will be disseminated through relevant conference presentations and publications.

A Proof-of-Concept Investigation of an Energy Management Education Program to Improve Fatigue and Life Participation in Adults on Chronic Dialysis.

BACKGROUND: Fatigue and its negative impact on life participation are top research priorities of people on chronic dialysis therapy. Energy management education (EME) is a fatigue management approach that teaches people to use practical strategies (eg, prioritizing, using efficient body postures, organizing home environments) to manage their energy expenditure during everyday life. OBJECTIVE: The aim of this study is to explore whether EME is associated with improvements in fatigue and life participation in adults on chronic dialysis. DESIGN: Five single-case interrupted time-series AB studies, and follow-up qualitative interviews. SETTING: The hemodialysis and peritoneal dialysis units at an academic hospital in Toronto, Canada. PATIENTS: In total, 5 patients on chronic dialysis therapy were purposively selected to represent diversity in age, gender, and modality. MEASUREMENTS: Brief questionnaires assessing fatigue and life participation were administered weekly during the baseline and intervention periods. Additional validated questionnaires (the Fatigue Impact Scale, 36-Item Short-Form Health Survey [SF-36] Vitality Scale, and Canadian Occupational Performance Measure) were also administered at baseline and post-intervention. METHODS: All participants underwent "The PEP Program," a personalized, web-supported EME program designed to meet the needs of people on dialysis. During the program, participants complete 2 brief web modules about energy management, and then use energy management principles and a problem-solving framework to work on 3 life participation goals during sessions with a trained program administrator. Data were analyzed using visual analysis and the Tau-U statistic for the weekly time-series data, and thematic analysis for the qualitative interviews. RESULTS: Three of 5 participants displayed a consistently positive response to the Personal Energy Planning (PEP) program across multiple measures of fatigue and life participation. Tau-U effect size estimates ranged from small to moderate, according to the time-series data. All 5 participants expressed that the program had benefited them in qualitative follow-up interviews, with the most common reported benefit being that the program made day-to-day activities easier. The format of the program was also said to be feasible and convenient. LIMITATIONS: An exploratory, proof-of-concept study that used a small set of participants and lacked an active control comparison. CONCLUSIONS: The PEP program might have potential for improving fatigue-related outcomes in people on chronic dialysis. Larger, controlled studies of the program are warranted.

CONTEXTE: La fatigue et les effets négatifs qu'elle entraîne sur la participation à la vie constituent les principales priorités de recherche des personnes suivant un traitement de dialyse chronique. L'éducation à l'économie d'énergie, qui sensibilise les patients à des stratégies concrètes (priorisation, adoption de postures plus ergonomiques, organisation de l'environnement de vie) pour réduire leurs dépenses énergétiques au quotidien, est l'approche préconisée pour gérer la fatigue. OBJECTIF: Examiner l'association entre la sensibilisation à une bonne gestion de l'énergie et une amélioration de la fatigue et de la participation à la vie chez des adultes suivant des traitements de dialyse chronique. TYPE D'ÉTUDE: Cinq études chronologiques interrompues de type AB à cas unique, et entretiens de suivi qualitatif. CADRE: Les unités d'hémodialyse et de dialyse péritonéale d'un hôpital universitaire de Toronto (Canada). SUJETS: Des patients (n = 5) suivant des traitements de dialyse chronique sélectionnés à dessein pour être représentatifs de la diversité d'âges, de genres et de modalités. MESURES: Pendant la phase initiale et la période d'intervention, de courts questionnaires évaluant la fatigue et la participation à la vie, de même que des questionnaires validés supplémentaires (Fatigue Impact Scale, SF-36 Vitality Scale et Mesure canadienne du rendement occupationnel), ont été soumis chaque semaine aux patients. MÉTHODOLOGIE: Tous les participants ont suivi le « Programme d'éducation prédialyse ¼ (PEP), un programme en ligne d'éducation à la bonne gestion de l'énergie, adapté aux besoins des patients dialysés. Au cours du programme, les participants devaient compléter deux courts modules, puis intégrer les principes de gestion de l'énergie et un cadre de résolution de problèmes afin de travailler sur trois objectifs de participation à la vie au cours de séances avec un administrateur de programme formé. Les données ont été traitées avec l'analyse visuelle. La statistique Tau-U a été employée pour les séries hebdomadaires de données chronologiques et une analyse thématique pour les entretiens qualitatifs. RÉSULTATS: Trois des cinq participants ont réagi de façon positive et constante au PEP pour différentes mesures de fatigue et de participation à la vie. Selon les données des séries chronologiques, les estimations de la taille de l'effet Tau-U variaient de faible à modérée. Lors des entretiens de suivi qualificatif, tous les participants ont mentionné que le programme leur avait été bénéfique; le bienfait le plus souvent cité étant que celui-ci avait facilité leurs activités quotidiennes. Les participants ont également jugé le format du programme pratique et réalisable. LIMITES: Il s'agit d'une étude exploratoire visant une preuve de concept dont l'échantillon est faible et n'a pas fait l'objet d'une comparaison avec un contrôle actif. CONCLUSION: Le programme d'éducation prédialyse a le potentiel d'améliorer la qualité de vie des personnes sous dialyse chronique en les aidant à mieux gérer la fatigue. L'évaluation du programme requiert des études contrôlées de plus grande envergure.

Cognitive interventions for adults with chronic kidney disease: protocol for a scoping review.

BACKGROUND: Cognitive impairment is a common and frequently under-recognized complication of chronic kidney disease (CKD). Although there is extensive literature on cognitive interventions that can ameliorate cognitive impairment or associated negative outcomes in the general literature, the breadth and characteristics of cognitive interventions that have been studied in people with CKD are currently unclear. The objective of this scoping review is to identify and describe the literature on cognitive interventions for adults with CKD, including end-stage kidney disease (ESKD). METHODS: A scoping review following Joanna Briggs Institute methodology will be conducted. With assistance from an information specialist, we will search 5 electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and CINAHL Plus) using search terms that represent the target population (CKD) and concept (cognition), and conduct backward citation searching for additional literature. Eligible sources will be primary research studies (quantitative or qualitative) that investigate any intervention targeting cognition in adults (≥ 18 years) with CKD or ESKD, including those treated with dialysis. We will extract data about characteristics of interventions (e.g., type, underlying theory, design, location, and provider), populations (e.g., stage of CKD, age, sex, and type of cognitive impairment), and studies (e.g., authors, location, design, and reported findings). Article screening and data extraction will be performed by two to three reviewers. Data will be analyzed using descriptive statistics and narrative syntheses to characterize the literature on cognitive interventions for people with CKD. DISCUSSION: This study will provide a comprehensive overview of the cognitive interventions that have been studied for people with CKD. It will help identify research gaps within this population (e.g., types of interventions that have yet to be investigated; best practices in cognition research that have not been implemented) and inform the direction of future research in this field.

Importance of Early Inpatient Geriatric Rehabilitation on Outcomes in Individuals on Dialysis.

OBJECTIVE: To report short-term functional outcomes of patients incident to dialysis undergoing inpatient rehabilitation within 3 months of dialysis initiation. DESIGN: Retrospective observation study using prospectively collected data. SETTING: Single-center, hospital-based geriatric dialysis rehabilitation unit. All patients incident to hemodialysis admitted to the geriatric dialysis rehabilitation unit between May 2002 and April 2016 were identified using a retrospective observational design. Clinical and demographic data were collected prospectively and linked, using the unique hospital number and dates of admission and discharge, to FIM scores (used to assess functional recovery) at admission and discharge. PARTICIPANTS: Patients (N=449; mean age ± SD, 74±9y) newly started on hemodialysis (within 3mo). INTERVENTIONS: Inpatient rehabilitation care, short daily dialysis therapy with nephrologist support, and geriatrician assessment. MAIN OUTCOMES: Change in FIM score; discharge location. RESULTS: Patients were admitted within 3 months of hemodialysis initiation. The median length of stay in the rehabilitation program was 43 days (25th and 75th quartile, 33-55 days). Of those with complete data (n=370), 95% had improvement in FIM scores (median changes in total FIM score 25 [quartiles, 16, 33]; in motor FIM 23 [quartiles, 15, 32]; and in cognitive FIM 1 [quartiles, 0, 3], respectively). Most improvement was seen in transfer abilities, grooming, and mobility. A total of 324 patients (72%; 95% CI, 68%-76%) were discharged to a private home. An additional 11 were discharged to a seniors' residence. CONCLUSION: The data suggest that older patients incident to dialysis with functional decline respond well to specialized rehabilitation care and suggest this may be a novel approach to dialysis initiation.

Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop.

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.

Self-management interventions for cancer survivors: A systematic review and evaluation of intervention content and theories.

OBJECTIVE: Self-management has been proposed as a strategy to help cancer patients optimize their health and well-being during survivorship. Previous reviews have shown variable effects of self-management on outcomes. The theoretical basis and psychoeducational components of these interventions have not been evaluated in detail. We aimed to evaluate the evidence for self-management and provide a description of the components of these interventions. METHODS: We conducted a systematic review of self-management interventions for adults who had completed primary cancer treatment by searching MEDLINE, EMBASE, PsychINFO, CINAHL, Scopus, Cochrane Database of Systematic Reviews, National Institutes of Health Clinical Trials Registry, and Cochrane CENTRAL Registry of Controlled Trials. We included experimental and quasiexperimental designs. Data synthesis included narrative and tabular summary of results; heterogeneity of interventions and outcomes precluded meta-analysis. Study quality was evaluated using the Cochrane risk of bias tool or the risk of bias of nonrandomized studies tool. RESULTS: Forty-one studies published between 1994 and 29 March 2018 were included. Studies were predominantly randomized controlled trials and targeted to breast cancer survivors. A variety of intervention designs, psychoeducational components, and outcomes were identified. Less than 50% of the studies included a theoretical framework. There was variability of effects across most outcomes. Risk of bias could not be fully assessed. CONCLUSIONS: There are limitations in the design and research on self-management interventions for cancer survivors that hinder their translation into clinical practice. Further research is needed to understand if these interventions are an important type of support for cancer survivors.

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).