Capacity for the management of kidney failure in the International Society of Nephrology North America and the Caribbean region: report from the 2023 ISN Global Kidney Health Atlas (ISN-GKHA).

The International Society of Nephrology Global Kidney Health Atlas charts the availability and capacity of kidney care globally. In the North America and the Caribbean region, the Atlas can identify opportunities for kidney care improvement, particularly in Caribbean countries where structures for systematic data collection are lacking. In this third iteration, respondents from 12 of 18 countries from the region reported a 2-fold higher than global median prevalence of dialysis and transplantation, and a 3-fold higher than global median prevalence of dialysis centers. The peritoneal dialysis prevalence was lower than the global median, and transplantation data were missing from 6 of the 10 Caribbean countries. Government-funded payments predominated for dialysis modalities, with greater heterogeneity in transplantation payor mix. Services for chronic kidney disease, such as monitoring of anemia and blood pressure, and diagnostic capability relying on serum creatinine and urinalyses were universally available. Notable exceptions in Caribbean countries included non-calcium-based phosphate binders and kidney biopsy services. Personnel shortages were reported across the region. Kidney failure was identified as a governmental priority more commonly than was chronic kidney disease or acute kidney injury. In this generally affluent region, patients have better access to kidney replacement therapy and chronic kidney disease-related services than in much of the world. Yet clear heterogeneity exists, especially among the Caribbean countries struggling with dialysis and personnel capacity. Important steps to improve kidney care in the region include increased emphasis on preventive care, a focus on home-based modalities and transplantation, and solutions to train and retain specialized allied health professionals.

Partnership-building considerations for implementation science in learning health systems: a case study of the Implementation Science Collaborative in Alberta, Canada.

Introduction: Implementation 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. Methods: We 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. Results: Alberta'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. Discussion: This 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.

Pain management and the use of opioids in adults with kidney failure receiving conservative kidney management.

Conservative kidney management (CKM) is an active treatment for kidney failure (KF) for people who will either not benefit from kidney replacement therapy (KRT), do not wish to pursue KRT, or do not have access to KRT. CKM aims to improve patients' quality-of-life through meticulous attention to symptom management. KF is associated with a high symptom burden globally that is experienced across age, sex, and race with chronic pain being one of the most severe and common symptoms. The delivery of CKM therefore requires the integration of effective pain management strategies. This review will provide a detailed insight into CKM globally and will offer an approach to pain management for people with KF who are receiving CKM. Specifically, this review will provide an overview of the clinical characteristics of people receiving CKM across both high and low resource settings and the epidemiology of pain in this population. While it will provide some high-level considerations for the non-pharmacologic management of pain, it will focus predominantly on pharmacologic approaches. This will include considerations of non-opioid analgesics and strategies for the use of opioids in people receiving CKM. Furthermore, we will explore global disparities in kidney care, CKM, and pain management resources, including access to opioids and will discuss some of the additional challenges faced in low resource settings.

An update on the global disparities in kidney disease burden and care across world countries and regions.

BACKGROUND: Since 2015, the International Society of Nephrology (ISN) Global Kidney Health Atlas (ISN-GKHA) has spearheaded multinational efforts to understand the status and capacity of countries to provide optimal kidney care, particularly in low-resource settings. In this iteration of the ISN-GKHA, we sought to extend previous findings by assessing availability, accessibility, quality, and affordability of medicines, kidney replacement therapy (KRT), and conservative kidney management (CKM). METHODS: A consistent approach was used to obtain country-level data on kidney care capacity during three phases of data collection in 2016, 2018, and 2022. The current report includes a detailed literature review of published reports, databases, and registries to obtain information on the burden of chronic kidney disease and estimate the incidence and prevalence of treated kidney failure. Findings were triangulated with data from a multinational survey of opinion leaders based on the WHO's building blocks for health systems (ie, health financing, service delivery, access to essential medicines and health technology, health information systems, workforce, and governance). Country-level data were stratified by the ISN geographical regions and World Bank income groups and reported as counts and percentages, with global, regional, and income level estimates presented as medians with interquartile ranges. FINDINGS: The literature review used information on prevalence of chronic kidney disease from 161 countries. The global median prevalence of chronic kidney disease was 9·5% (IQR 5·9-11·7) with the highest prevalence in Eastern and Central Europe (12·8%, 11·9-14·1). For the survey analysis, responses received covered 167 (87%) of 191 countries, representing 97·4% (7·700 billion of 7·903 billion) of the world population. Chronic haemodialysis was available in 162 (98%) of 165 countries, chronic peritoneal dialysis in 130 (79%), and kidney transplantation in 116 (70%). However, 121 (74%) of 164 countries were able to provide KRT to more than 50% of people with kidney failure. Children did not have access to haemodialysis in 12 (19%) of 62 countries, peritoneal dialysis in three (6%) countries, or kidney transplantation in three (6%) countries. CKM (non-dialysis management of people with kidney failure chosen through shared decision making) was available in 87 (53%) of 165 countries. The annual median costs of KRT were: US$19 380 per person for haemodialysis, $18 959 for peritoneal dialysis, and $26 903 for the first year of kidney transplantation. Overall, 74 (45%) of 166 countries allocated public funding to provide free haemodialysis at the point of delivery; use of this funding scheme increased with country income level. The median global prevalence of nephrologists was 11·8 per million population (IQR 1·8-24·8) with an 80-fold difference between low-income and high-income countries. Differing degrees of health workforce shortages were reported across regions and country income levels. A quarter of countries had a national chronic kidney disease-specific strategy (41 [25%] of 162) and chronic kidney disease was recognised as a health priority in 78 (48%) of 162 countries. INTERPRETATION: This study provides new information about the global burden of kidney disease and its treatment. Countries in low-resource settings have substantially diminished capacity for kidney care delivery. These findings have major policy implications for achieving equitable access to kidney care. FUNDING: International Society of Nephrology.

Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure.

Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.

Referral Criteria to Specialist Palliative Care for People with Advanced Chronic Kidney Disease: A Systematic Review.

CONTEXT: People with advanced chronic kidney disease (CKD) have significant morbidity, yet for many, access to palliative care occurs late, if at all. OBJECTIVES: This study sought to examine criteria for referral to specialist palliative care for adults with advanced CKD with a view to improving use of these essential services. METHODS: Systematic review of studies detailing referral criteria to palliative care in advanced CKD conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guideline and registered (PROSPERO: CRD42021230751). DATA SOURCES: Electronic databases (Ovid, MEDLINE, Ovid Embase, and PubMed) were used to identify potential studies, which were subjected to double review, data extraction, thematic coding, and descriptive analyses. RESULTS: Searches yielded 650 unique titles ultimately resulting in 56 studies addressing referral criteria to specialist palliative care in advanced CKD. Of 10 categories of referral criteria, most commonly discussed were: Critical times of treatment decision making (n = 23, 41%); physical or emotional symptoms (n = 22, 39%); limited prognosis (n = 18, 32%); patient age and comorbidities (n = 18, 32%); category of CKD/ biochemical criteria (n = 13, 23%); functional decline (n = 13, 23); psychosocial needs (n = 9, 16%); future care planning (n = 9, 16%); anticipated decline in illness course (n = 8, 14%); and hospital use (n = 8, 14%). CONCLUSION: Clinicians consider referral to specialist palliative care for a wide range of reasons, with many related to care needs. As palliative care continues to integrate with nephrology, our findings represent a key step towards developing consensus criteria to standardize referral for patients with chronic kidney diseases.

Managing the symptom burden associated with maintenance dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference.

Individuals with kidney failure undergoing maintenance dialysis frequently report a high symptom burden that can interfere with functioning and diminish life satisfaction. Until recently, the focus of nephrology care for dialysis patients has been related primarily to numerical targets for laboratory measures, and outcomes such as cardiovascular disease and mortality. Routine symptom assessment is not universal or standardized in dialysis care. Even when symptoms are identified, treatment options are limited and are initiated infrequently, in part because of a paucity of evidence in the dialysis population and the complexities of medication interactions in kidney failure. In May of 2022, Kidney Disease: Improving Global Outcomes (KDIGO) held a Controversies Conference-Symptom-Based Complications in Dialysis-to identify the optimal means for diagnosing and managing symptom-based complications in patients undergoing maintenance dialysis. Participants included patients, physicians, behavioral therapists, nurses, pharmacists, and clinical researchers. They outlined foundational principles and consensus points related to identifying and addressing symptoms experienced by patients undergoing dialysis and described gaps in the knowledge base and priorities for research. Healthcare delivery and education systems have a responsibility to provide individualized symptom assessment and management. Nephrology teams should take the lead in symptom management, although this does not necessarily mean taking ownership of all aspects of care. Even when options for clinical response are limited, clinicians should focus on acknowledging, prioritizing, and managing symptoms that are most important to individual patients. A recognized factor in the initiation and implementation of improvements in symptom assessment and management is that they will be based on locally existing needs and resources.

Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease.

BACKGROUND: Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-specific pain questionnaire: the ADPKD Pain and Discomfort Scale (ADPKD-PDS). METHODS: Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity. RESULTS: In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period. CONCLUSIONS: The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD.

Short-term and long-term survival in patients with prevalent haemodialysis-an integrated prognostic model: external validation.

OBJECTIVES: Prognostic tools with evidence for external validity in routine clinical practice are needed to align care with patients' preferences and deliver timely supportive services. Current models have limited, if any, evidence for external validity and none have been implemented and evaluated in clinical practice on a large scale. This study sought to provide evidence for external validity in a real life setting of the Cohen prognostic model that integrates actuarial factors with the 'Surprise Question' to assess 6-month, 12-month and 18-month survival of prevalent haemodialysis patients. METHODS: Cross-sectional study of 1372 patients in a Canadian university-based programme between 2010 and 2019. Survival probabilities were compared with observed survival. Discrimination and calibration were assessed through predicted risk-stratified observed survival, cumulative AUC, Somer's Dxy and a calibration slope estimate. RESULTS: Discrimination performance was moderate with a C statistic of 0.71-0.72 for all three time points. The model overpredicted mortality risk with the best predictive accuracy for 6- month survival. The differences between observed and mean predicted survival at 6 months, 12 months and 18 months were 3.2%, 8.8% and 12.9%, respectively. Kaplan-Meier curves stratified by Cox-based risk group showed good discrimination between high-risk and low-risk patients with HR estimates (95% CI): C2 vs C1 3.07 (1.57-5.99), C3 vs C1 5.85 (3.06-11.17), C4 vs C1 13.24 (6.91-25.34)). CONCLUSIONS: The Cohen prognostic model can be incorporated easily into routine dialysis care to identify patients at high risk for death over 6 months, 12 months and 18 months and help target vulnerable patients for timely supportive care interventions.

Patient views regarding cannabis use in chronic kidney disease and kidney failure: a survey study.

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

Association between Goals of Care Designation orders and health care resource use among seriously ill older adults in acute care: a multicentre prospective cohort study.

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

How the Routine Use of Patient-Reported Outcome Measures for Hemodialysis Care Influences Patient-Clinician Communication: A Mixed-Methods Study.

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

Long-term Outcomes Among Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis: A Systematic Review.

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

Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease.

PURPOSE: The Edmonton Symptom Assessment System-Revised: Renal (ESAS-r: Renal) is a disease-specific patient-reported outcome measure (PROM) that assesses symptoms common in chronic kidney disease (CKD). There is no preference-based scoring system for the ESAS-r: Renal or a mapping algorithm to predict health utility values. We aimed to develop a mapping algorithm from the ESAS-r: Renal to the Canadian EQ-5D-5L index scores. METHODS: We used data from a multi-centre cluster randomized-controlled trial of the routine measurement and reporting of PROMs in hemodialysis units in Northern Alberta, Canada. In two arms of the trial, both the ESAS-r: Renal and the EQ-5D-5L were administered to CKD patients undergoing hemodialysis. We used data from one arm for model estimation, and data from the other for validation. We explored direct and indirect mapping models; model selection was based on statistical fit and predictive power. RESULTS: Complete data were available for 506 patient records in the estimation sample and 242 in the validation sample. All models tended to perform better in patients with good health, and worse in those with poor health. Generalized estimating equations (GEE) and generalized linear model (GLM) on selected ESAS-r: Renal items were selected as final models as they fitted the best in estimation and validation sample. CONCLUSION: When only ESAS-r: Renal data are available, one could use GEE and GLM to predict EQ-5D-5L index scores for use in economic evaluation. External validation on populations with different characteristics is warranted, especially where renal-specific symptoms are more prevalent.

Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).

BACKGROUND: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms. METHODS: This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire. RESULTS: Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire. CONCLUSIONS: PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. A higher resolution version of the Graphical abstract is available as Supplementary information.

Canadian Association of Paediatric Nephrologists COVID-19 Rapid Response: Home and In-Center Dialysis Guidance.

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.

Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study.

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.