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Abstract Background Communities of practice support evidence‐based practice and can be, in and of themselves, applied learning spaces in organizations. However, the variety of ways that communities of practice can support learning health systems are poorly characterized. Furthermore, health system leaders have little guidance on designing and resourcing communities of practice to effectively serve learning health systems. Methods We conducted a collective case study, examining a cross‐section of Canadian‐based communities of practice dedicated to supporting evidence‐based practice. We held semi‐structured interviews with 21 participants representing 16 communities of practice and 5 community of practice facilitation platforms that provide administration support, tools, and oversight for multiple communities of practice. Using the Conceptual Framework for Value‐Creating Learning Health Systems, we characterized the numerous roles that communities of practice can take to support learning health systems. We also pulled insights from the interviews on properly resourcing and managing communities of practice. Results Communities of practice can advance learning health systems across learning cycles (ie, identifying learning priorities, generating data and knowledge, and implementing and evaluating change). They also act as important infrastructure required to share and coordinate across learning health systems. Community of practice facilitation platforms reduce staff members' workload, in turn, creating greater efficiency and effectiveness across community of practice lifespans. Furthermore, these platforms can be a mechanism to coordinate critical activities (e.g., priority alignment, knowledge brokerage/sharing across the broader system). Conclusion To the authors' knowledge, this is the first study to characterize communities of practice across the learning health system landscape. With these results, learning health system leaders have a catalog that clarifies the potential communities of practice roles in knowledge generation, implementation, and uptake of new evidence. Furthermore, the results provide evidence that organizational investment in overarching community of practice facilitation platforms will strengthen and accelerate community of practice supports in learning health systems.

IntroductionImplementation of health innovations is inherently collaborative, requiring trans-sectoral partnerships between implementation researchers, innovation teams, and implementation practitioners. Implementation science has been shown to improve implementation successes; however, challenges that hinder partnerships to advance implementation science continue to persist. Using a whole-system approach to assess and respond to implementation science partnership barriers may shed light on effective responses.MethodsWe conducted a case study of Alberta's learning health system, using semi-structured group and individual interviews to create a nuanced understanding of the considerations required for implementation research collaborations. We interviewed 53 participants representing 21 offices in the health system, academia, professional associations, and government who regularly plan, evaluate, and/or study health system implementation initiatives in Alberta. Using the Partnership Model for Research Capacity Building, we identified current facilitators and challenges for partnerships for conducting and using implementation science, at different levels of Alberta's health-research ecosystem.ResultsAlberta's healthcare system is well set up to readily embed intervention effectiveness and efficacy research. Infrastructure was also in place to strengthen implementation practice. However, weaknesses around exchanging knowledge and skills, providing feedback and mentoring, and accommodating diversity affected the ability of both individuals and teams to build implementation science capacity. Without this capacity, teams could not participate in embedded implementation research collaborations. We report the response of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit to these barriers to provide practical guidance on various program options to strengthen individual- and organization-level implementation science capacity.DiscussionThis study applied a whole-system approach to assess factors across Alberta's health-research ecosystem, which affect partnerships to advance implementation science. Our findings illustrated that partnership considerations go beyond interpersonal factors and include system-wide considerations. With the results, health organization leaders have (1) a method for assessing organizational capability to readily embed implementation research and (2) a catalog of potential responses to create conditions to readily engage with implementation science in their day-to-day implementation processes.

Abstract Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients’ symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients’ health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients’ wellbeing is key to improving patients’ health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements.

Abstract Background We aimed to describe (1) depressive and anxiety symptom burdens reported by adults on in-centre hemodialysis in Northern Alberta, Canada and (2) patients’ and nurses’ perceptions of managing such symptoms using routine patient-reported outcome measures (PROMs). Methods A longitudinal mixed methods approach was employed. Cluster randomized controlled trial data exposed the prevalence of positive screens (scores ≥ 3) for depressive (PHQ-2) and anxiety (GAD-2) symptoms. A descriptive qualitative approach was used to understand patients’ and nurses’ perceptions of managing these symptoms using the ESAS-r: Renal and EQ-5D-5L. Using purposeful sampling, patients and nurses were invited for interviews. Field notes were documented from 6 dialysis unit observations. Patients’ responses to open-ended survey questions and nurses’ electronic chart notes related to mental health were compiled. Thematic and content analyses were used. Results Average age of patients (n = 408) was 64.0 years (SD 15.4), 57% were male, and 87% were not working; 29% screened positive for depressive symptoms, 21% for anxiety symptoms, and 16% for both. From patient (n = 10) and nurse (n = 8) interviews, unit observations, patient survey responses (n = 779) and nurses’ chart notes (n = 84), we discerned that PROMs (ESAS-r: Renal/EQ-5D-5L) had the potential to identify and prompt management of mental health concerns. However, opinions differed about whether mental health was within kidney care scope. Nonetheless, participants agreed there was a lack of mental health resources. Conclusions Prevalence of depressive and anxiety symptoms aligned with existing literature. Tensions regarding mental health management highlight the need for systemic decisions about how routine PROM use, including mental health assessment, may be optimized to meet patients’ needs.

Abstract 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.

Purpose of the program: This article provides guidance on optimizing the management of pediatric patients with end-stage kidney disease (ESKD) who will be or are being treated with any form of home or in-center dialysis during the COVID-19 pandemic. The goals are to provide the best possible care for pediatric patients with ESKD during the pandemic and ensure the health care team’s safety. Sources of information: The core of these rapid guidelines is derived from the Canadian Society of Nephrology (CSN) consensus recommendations for adult patients recently published in the Canadian Journal of Kidney Health and Disease ( CJKHD ). We also consulted specific documents from other national and international agencies focused on pediatric kidney health. Additional information was obtained by formal review of the published academic literature relevant to pediatric home or in-center hemodialysis. Methods: The Leadership of the Canadian Association of Paediatric Nephrologists (CAPN), which is affiliated with the CSN, solicited a team of clinicians and researchers with expertise in pediatric home and in-center dialysis. The goal was to adapt the guidelines recently adopted for Canadian adult dialysis patients for pediatric-specific settings. These included specific COVID-19-related themes that apply to dialysis in a Canadian environment, as determined by a group of senior renal leaders. Expert clinicians and nurses with deep expertise in pediatric home and in-center dialysis reviewed the revised pediatric guidelines. Key findings: We identified 7 broad areas of home dialysis practice management that may be affected by the COVID-19 pandemic: (1) peritoneal dialysis catheter placement, (2) home dialysis training, (3) home dialysis management, (4) personal protective equipment, (5) product delivery, (6) minimizing direct health care providers and patient contact, and (7) caregivers support in the community. In addition, we identified 8 broad areas of in-center dialysis practice management that may be affected by the COVID-19 pandemic: (1) identification of patients with COVID-19, (2) hemodialysis of patients with confirmed COVID-19, (3) hemodialysis of patients not yet known to have COVID-19, (4) management of visitors to the dialysis unit, (5) handling COVID-19 testing of patients and staff, (6) safe practices during resuscitation procedures in a pandemic, (7) routine hemodialysis care, and (8) hemodialysis care under fixed dialysis resources. We make specific suggestions and recommendations for each of these areas. Limitations: At the time when we started this work, we knew that evidence on the topic of pediatric dialysis and COVID-19 would be severely limited, and our resources were also limited. We did not, therefore, do formal systematic review or meta-analysis. We did not evaluate our specific suggestions in the clinical environment. Thus, this article’s advice and recommendations are primarily expert opinions and subject to the biases associated with this level of evidence. To expedite the publication of this work, we created a parallel review process that may not be as robust as standard arms’ length peer-review processes. Implications: We intend these recommendations to help provide the best care possible for pediatric patients prescribed in-center or home dialysis during the COVID-19 pandemic, a time of altered priorities and reduced resources.

Background: Chronic pain is a common and distressing symptom reported by patients with chronic kidney disease (CKD). Clinical practice and research in this area do not appear to be advancing sufficiently to address the issue of chronic pain management in patients with CKD. Objectives: To determine the prevalence and severity of chronic pain in patients with CKD. Design: Systematic review and meta-analysis. Setting: Interventional and observational studies presenting data from 2000 or later. Exclusion criteria included acute kidney injury or studies that limited the study population to a specific cause, symptom, and/or comorbidity. Patients: Adults with glomerular filtration rate (GFR) category 3 to 5 CKD including dialysis patients and those managed conservatively without dialysis. Measurements: Data extracted included title, first author, design, country, year of data collection, publication year, mean age, stage of CKD, prevalence of pain, and severity of pain. Methods: Databases searched included MEDLINE, CINAHL, EMBASE, and Cochrane Library, last searched on February 3, 2020. Two reviewers independently screened all titles and abstracts, assessed potentially relevant articles, and extracted data. We estimated pooled prevalence of overall chronic pain, musculoskeletal pain, bone/joint pain, muscle pain/soreness, and neuropathic pain and the I 2 statistic was computed to measure heterogeneity. Random effects models were used to account for variations in study design and sample populations and a double arcsine transformation was used in the model calculations to account for potential overweighting of studies reporting either very high or very low prevalence measurements. Pain severity scores were calibrated to a score out of 10, to compare across studies. Weighted mean severity scores and 95% confidence intervals were reported. Results: Sixty-eight studies representing 16 558 patients from 26 countries were included. The mean prevalence of chronic pain in hemodialysis patients was 60.5%, and the mean prevalence of moderate or severe pain was 43.6%. Although limited, pain prevalence data for peritoneal dialysis patients (35.9%), those managed conservatively without dialysis (59.8%), those following withdrawal of dialysis (39.2%), and patients with earlier GFR category of CKD (61.2%) suggest similarly high prevalence rates. Limitations: Studies lacked a consistent approach to defining the chronicity and nature of pain. There was also variability in the measures used to determine pain severity, limiting the ability to compare findings across populations. Furthermore, most studies reported mean severity scores for the entire cohort, rather than reporting the prevalence (numerator and denominator) for each of the pain severity categories (mild, moderate, and severe). Mean severity scores for a population do not allow for “responder analyses” nor allow for an understanding of clinically relevant pain. Conclusions: Chronic pain is common and often severe across diverse CKD populations providing a strong imperative to establish chronic pain management as a clinical and research priority. Future research needs to move toward a better understanding of the determinants of chronic pain and to evaluating the effectiveness of pain management strategies with particular attention to the patient outcomes such as overall symptom burden, physical function, and quality of life. The current variability in the outcome measures used to assess pain limits the ability to pool data or make comparisons among studies, which will hinder future evaluations of the efficacy and effectiveness of treatments. Recommendations for measuring and reporting pain in future CKD studies are provided. Trial registration: PROSPERO Registration number CRD42020166965

Purpose: To collate best practice recommendations on the management of patients receiving in-center hemodialysis during the COVID-19 pandemic, based on published reports and current public health advice, while considering ethical principles and the unique circumstances of Canadian hemodialysis units across the country. Sources of information: The workgroup members used Internet search engines to retrieve documents from provincial and local hemodialysis programs; provincial public health agencies; the Centers for Disease Control and Prevention; webinars and slides from other kidney agencies; and nonreviewed preprints. PubMed was used to search for peer-reviewed published articles. Informal input was sought from knowledge users during a webinar. Methods: Challenges in the care of hemodialysis patients during the COVID-19 pandemic were highlighted within the Canadian Senior Renal Leaders Forum discussion group. The Canadian Society of Nephrology (CSN) developed the COVID-19 rapid response team (RRT) to address these challenges. They identified a pan-Canadian team of clinicians and administrators with expertise in hemodialysis to form the workgroup. One lead was chosen who drafted the initial document. Members of the workgroup reviewed and discussed all recommendations in detail during 2 virtual meetings on April 7 and April 9. Disagreements were resolved by consensus. The document was reviewed by the CSN COVID-19 RRT, an ethicist, an infection control expert, a community nephrologist, and a patient partner. Content was presented during an interactive webinar on April 11, 2020 attended by 269 kidney health professionals, and the webinar and first draft of the document were posted online. Final revisions were made based on feedback received until April 13, 2020. CJKHD editors reviewed the parallel process peer review and edited the manuscript for clarity. Key findings: Recommendations were made under the following themes: (1) Identification of patients with COVID-19 in the dialysis unit, (2) hemodialysis of patients with confirmed COVID-19, (3) hemodialysis of patients not yet known to have COVID-19, (4) visitors; (5) testing for COVID-19 in the dialysis unit; (6) resuscitation, (6) routine hemodialysis care, (7) hemodialysis care under fixed dialysis resources. Limitations: Because of limitations of time and resources, and the large number of questions, formal systematic review was not undertaken. The recommendations are based on expert opinion and subject to bias. The parallel review process that was created may not be as robust as the standard peer review process. Implications: We hope that these recommendations provide guidance for dialysis unit directors, clinicians, and administrators on how to limit risk from infection and adverse outcomes, while providing necessary dialysis care in a setting of finite resources. We also identify a number of resource allocation priorities, which we hope will inform decisions at provincial funding agencies.

Background: Pain is common in patients with chronic kidney disease (CKD). Analgesics may be appropriate for some CKD patients. Objectives: To determine the prevalence of overall analgesic use and the use of different types of analgesics including acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), adjuvants, and opioids in patients with CKD. Design: Systematic review and meta-analysis. Setting: Interventional and observational studies presenting data from 2000 or later. Exclusion criteria included acute kidney injury or studies that limited the study population to a specific cause, symptom, and/or comorbidity. Patients: Adults with stage 3-5 CKD including dialysis patients and those managed conservatively without dialysis. Measurements: Data extracted included title, first author, design, country, year of data collection, publication year, mean age, stage of CKD, prevalence of analgesic use, and the types of analgesics prescribed. Methods: Databases searched included MEDLINE, CINAHL, EMBASE, and Cochrane Library. Two reviewers independently screened all titles and abstracts, assessed potentially relevant articles, and extracted data. We estimated pooled prevalence of analgesic use and the I 2 statistic was computed to measure heterogeneity. Random-effects models were used to account for variations in study design and sample populations, and a double arcsine transformation of the prevalence variables was used to accommodate potential overweighting of studies with very large or very small prevalence measurements. Sensitivity analyses were performed to determine the magnitude of publication bias and assess possible sources of heterogeneity. Results: Forty studies were included in the analysis. The prevalence of overall analgesic use in the random-effects model was 50.8%. The prevalence of acetaminophen, NSAIDs, and adjuvant use was 27.5%, 17.2%, and 23.4%, respectively, while the prevalence of opioid use was 23.8%. Due to the possibility of publication bias, the actual prevalence of acetaminophen use in patients with advanced CKD may be substantially lower than this meta-analysis indicates. A trim-and-fill analysis decreased the pooled prevalence estimate of acetaminophen use to 5.4%. The prevalence rate for opioid use was highly influenced by 2 large US studies. When these were removed, the estimated prevalence decreased to 17.3%. Limitations: There was a lack of detailed information regarding the analgesic regimen (such as specific analgesics used within each class and inconsistent accounting for patients on multiple drugs and the use of over-the-counter analgesics such as acetaminophen and NSAIDs), patient characteristics, type of pain being treated, and the outcomes of treatment. Data on adjuvant use were very limited. These results, therefore, must be interpreted with caution. Conclusions: There was tremendous variability in the prescribing patterns of both nonopioid and opioid analgesics within and between countries suggesting widespread uncertainty about the optimal pharmacological approach to treating pain. Further research that incorporates robust reporting of analgesic regimens and links prescribing patterns to clinical outcomes is needed to guide optimal clinical practice.

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

Background: Many patients who receive chronic hemodialysis have a limited life expectancy comparable to that of patients with metastatic cancer. However, patterns of home palliative care use among patients receiving hemodialysis are unknown. Objectives: We aimed to undertake a current-state analysis to inform measurement and quality improvement in palliative service use in Ontario. Methods: We conducted a descriptive study of outcomes and home palliative care use by Ontario residents maintained on chronic dialysis using multiple provincial healthcare datasets. The period of study was the final year of life, for those died between January 2010 and December 2014. Results: We identified 9611 patients meeting inclusion criteria. At death, patients were (median [Q1, Q3] or %): 75 (66, 82) years old, on dialysis for 3.0 (1.0-6.0) years, 41% were women, 65% had diabetes, 29.6% had dementia, and 13.9% had high-impact neoplasms, and 19.9% had discontinued dialysis within 30 days of death. During the last year of life, 13.1% received ⩾1 home palliative services. Compared with patients who had no palliative services, those who received home palliative care visits had fewer emergency department and intensive care unit visits in the last 30 days of life, more deaths at home (17.1 vs 1.4%), and a lower frequency of deaths with an associated intensive care unit stay (8.1 vs 37.8%). Conclusions: Only a small proportion of patients receiving dialysis in Ontario received support through the home palliative care system. There appears to be an opportunity to improve palliative care support in parallel with dialysis care, which may improve patient, family, and health-system outcomes.