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Background: Home haemodialysis (HHD) is utilized significantly less often than facility HD globally with few exceptions, despite being associated with improved survival and better quality of life. Previously HHD was exclusively offered to younger patients with a few comorbidities. However, with the increasing burden of end-stage kidney disease (ESKD) alongside an ageing population, increasing numbers of older patients are being treated with HHD. This study aims to re-evaluate survival and related outcomes in the context of this epidemiological shift. Method(s): A matched cohort design was used to compare all-cause mortality, transplantation, average biochemical values and graft survival 6 months post-transplant between HHD and facility HD patients. A total of 181 HHD patients from a major hospital network were included with 413 facility HD patients from the Australia and New Zealand Dialysis and Transplant Registry matched by age, gender and cause of ESKD. Survival analysis and competing risks analysis (for transplantation) were performed. Result(s): After adjusting for body mass index, smoking status, racial group and comorbidities, HHD was associated with a significantly reduced risk of death compared with facility HD patients [hazard ratio 0.47 (95% confidence interval 0.30-0.74)]. Transplantation rates were comparable, with high rates of graft survival at 6 months in both groups. Haemoglobin, calcium and parathyroid hormone levels did not vary significantly. However, HHD patients had significantly lower phosphate levels. Conclusion(s): In this study, improved survival outcomes were observed in patients on home compared with facility dialysis, with comparable rates of transplantation, graft survival and biochemical control.Copyright © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background: Podocyte loss is a key event in primary focal segmental glomerulosclerosis (FSGS). Common first-line therapy for patients with primary FSGS involves steroid therapy with or without blood pressure control; however 40-70% of patients achieve no remission. Animal studies have shown that treatment efficacy is achieved partly through preservation of podocyte number, as well as podocyte protective effects. Animal studies have also determined that podocyte number and density are predictive of FSGS severity. Therefore, this study aimed to determine if podocyte number and density can predict the response to therapy in patients with primary FSGS. Method(s): A retrospective cohort study of renal biopsies was conducted from 2009-2020 in Melbourne, Australia at a tertiary hospital (Monash Medical Centre). Patients diagnosed with primary FSGS were screened (n=84). Patients were excluded for lack of consent for samples to be used for research purposes (n=38), risks of other forms of FSGS (n=13), insufficient clinical data available (n=2), no biopsy tissue available (n=7) or <6 glomerular profiles available in the biopsy (n=5). Included patients were allocated into groups of treatment responders (n=11) or non-responders (n=8) based on urinary/serum data 6 months following initial diagnosis and commencement of treatment. Biopsies were immunofluorescently stained for podocyte-specific markers. Model-based stereology was used to estimate podometrics. Sections were re-stained with PAS to measure the glomerulosclerotic index (GSI). Result(s): Podocyte number per glomerulus in responders (347 (215-606); median (IQR)) was 45% higher than in non-responders (190; 143-263) (P=0.03). Podocyte density in responders (76; 58-142 per 106mum3 of glomerular volume) was similar to nonresponders (66; 44-88 per 106mum3 of glomerular volume) (P=0.38). GSI was significantly higher in non-responder patients (1.1; 0.6-2.3) than responders (0.6; 0.2-0.9) (P=0.04), and was significantly and nega

Background: Despite the emergence of diagnostic and clinical utility evidence in nephrology, publicly funded access to genomic testing is restricted in most health care systems. To establish genomic sequencing as a clinical test, an evaluation of cost-effectiveness is urgently required. Method(s): An economic evaluation, informed by a primary clinical study and available clinical evidence and guidelines in nephrology, was performed to evaluate the cost-effectiveness and optimal timing of exome sequencing (ES) in adults and children with suspected monogenic glomerular diseases compared with nongenomic investigations (NGIs). Six diagnostic strategies reflecting current practice and recommended models of care in Australia were modeled: (i) NGIs, (ii) late gene panel followed by ES, (iii) late ES, (iv) early gene panel, (v) early gene panel followed by ES, and (vi) early ES. Result(s): ES with targeted analysis achieved a diagnosis in 23 of 63 (36.5%) adults and 10 of 24 (41.6%) children. NGIs were estimated to diagnose 4.0% of children, with an average estimated cost of AU$6120 per child. Integrating ES as a first-line test in children was cost saving, with an incremental cost saving of AU$3230 per additional diagnosis compared with NGIs. In adults, NGIs was estimated to diagnose 8% of patients, with an average estimated cost of AU$1830 per person. In adults, integrating ES early resulted in an incremental cost per additional diagnosis of AU$5460 relative to NGIs. Conclusion(s): Early ES with targeted analysis was effective for diagnosing monogenic kidney disease, with substantial cost savings in children.Copyright © 2021

Aim: To describe the phenotypic spectrum in patients with diagnostic type 4 collagen variants, and to determine phenocopies of Alport Syndrome (AS). Background(s): AS is the second most common form of genetic kidney disease (GKD). Recently, Medicare approved testing for the three genes associated with AS. Pursuing genetic diagnosis has important clinical implications. Method(s): We compared the suspected diagnosis prior to ES with the genomic diagnosis in patients with suspected AS from a cohort of 204 patients with suspected GKD. We also compared the suspected diagnosis to the molecular diagnosis in patients who were found to have type 4 collagen variants following ES. Result(s): 80/204(39%) had diagnostic variants in genes related to kidney disease. 26/80(33%) had diagnostic type 4 collagen variants. Most patients (n = 13) had autosomal dominant (AD) COL4A3/4 nephropathy. Eleven had X-Linked dominant AS and 2 had autosomal recessive AS. ES reclassified the diagnosis in 7/26(27%) of patients with type 4 collagen variants. Furthermore, 3 patients who had clinical symptoms suspicious of AS were found to have an alternate diagnosis following ES (2 had X-linked recessive Dent Disease and 1 had AD hypoparathyroidism, sensorineural deafness and renal dysplasia). Conclusion(s): ES revealed type 4 collagen variants in 6 patients with alternate clinical diagnoses suspected at referral. Three additional patients who were thought to have AS were subsequently given an alternate diagnosis. We suggest that AS is underdiagnosed, and testing should be considered in patients with a suspected monogenic cause of hematuria. We also highlight the importance of expanding analysis to additional genes in the evaluation of patients with suspected AS, in addition to those reimbursed by Medicare. ES allows easier subsequent reanalysis of genomic data.

Rationale & Objective: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe. Study Design: A cross-sectional survey. Setting & Participants: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018. Outcome(s): PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures. Analytical Approach: Descriptive statistics. Result(s): Responses were received from 88% (n = 160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n = 156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for <=10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes. Limitation(s): Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data. Conclusion(s): Large inter- and intraregional disparities exist in PD availability, acce

Purpose: To determine the diagnostic yield and clinical impact of exome sequencing (ES) in patients with suspected monogenic kidney disease. Method(s): We performed clinically accredited singleton ES in a prospectively ascertained cohort of 204 patients assessed in multidisciplinary renal genetics clinics at four tertiary hospitals in Melbourne, Australia. Result(s): ES identified a molecular diagnosis in 80 (39%) patients, encompassing 35 distinct genetic disorders. Younger age at presentation was independently associated with an ES diagnosis (p < 0.001). Of those diagnosed, 31/80 (39%) had a change in their clinical diagnosis. ES diagnosis was considered to have contributed to management in 47/80 (59%), including negating the need for diagnostic renal biopsy in 10/80 (13%), changing surveillance in 35/80 (44%), and changing the treatment plan in 16/80 (20%). In cases with no change to management in the proband, the ES result had implications for the management of family members in 26/33 (79%). Cascade testing was subsequently offered to 40/80 families (50%). Conclusion(s): In this pragmatic pediatric and adult cohort with suspected monogenic kidney disease, ES had high diagnostic and clinical utility. Our findings, including predictors of positive diagnosis, can be used to guide clinical practice and health service design.Copyright © 2020, The Author(s).

Introduction: The 3-day interdialytic interval (IDI) is associated with high interdialytic weight gain (IDWG), but little is known about the effect of public or religious holidays on IDWG. Consequently, we evaluated the impact of the "Christmas holiday effect" on IDWG of hemodialysis patients. Method(s): A retrospective cohort study of adult hemodialysis patients (over 18 years) was conducted across five dialysis units in Australia. Demographic and clinical data were collected from electronic medical records. IDWG was established for three time points; regular 3-day IDI, 2-day IDI preceding the Christmas holiday and a 3-day IDI that included the Christmas holiday. Paired t-tests and logistic regression were used to compare differences in mean IDWG before and after the Christmas holiday and to examine factors associated with high IDWG, respectively. Finding(s): Two hundred and fifty-two patients, 69% of whom were male, with mean (SD) age of 65.4 +/- 15.3 years, were studied. Most had end-stage kidney disease due to diabetes (44%), and they had been on hemodialysis for a median of 25.5 (IQR, 60-10) months. There was a significant increase in absolute IDWG (MD 0.21 kg, 95% CI -0.07 to 0.36; P = 0.004) and relative IDWG (MD 0.3%, 95% CI 0.10-0.40; P = 0.01) after the holiday 3-day IDI compared with the regular 3-day IDI. Older age (OR 0.12; 95% CI 0.02-0.55) and a unit increase in hemoglobin (OR 0.94; 95% CI 0.89-0.99) were associated with lower odds of high relative IDWG while speaking a language other than English increased the odds for high relative IDWG (OR 5.03; 95% CI 1.12-22.65). Conclusion(s): Absolute and relative IDWG increased significantly after the Christmas holiday. Individualizing dialysis needs may improve outcomes for these patients.Copyright © 2020 International Society for Hemodialysis

Background: End-stage kidney disease secondary to hyperoxaluria presents a major challenge for transplant physicians given concern regarding disease recurrence. Few contemporary studies have reported long-term outcomes following transplantation in this population. Method(s): This study examined the outcomes of all adult patients with end-stage kidney disease secondary to hyperoxaluria who received a kidney or combined liver-kidney transplant in Australia and New Zealand between 1965 and 2015. Patients with hyperoxaluria were propensity score matched to control patients with reflux nephropathy. The primary outcome was graft survival. Secondary outcomes included graft function, acute rejection, and patient survival. Result(s): Nineteen transplants performed in 16 patients with hyperoxaluria were matched to 57 transplants in patients with reflux nephropathy. Graft survival was inferior in patients with hyperoxaluria receiving a kidney transplant alone (subhazard ratio [SHR] = 3.83, 95% confidence interval [CI], 1.22-12.08, P = .02) but not in those receiving a combined liver-kidney transplant (SHR = 0.63, 95% CI, 0.08-5.21, P =. 67). Graft failure risk was particularly high in patients with hyperoxaluria receiving a kidney transplant alone after more than 1 year of renal replacement therapy (SHR = 8.90, 95% CI, 2.35-33.76, P = .001). Posttransplant estimated glomerular filtration rate was lower in patients with hyperoxaluria (10.97 mL/min/1.73 m2, 95% CI, 0.53-21.42, P = .04). There was no difference between groups in the risk of acute rejection or death with a functioning graft. Conclusion(s): Compared to reflux nephropathy, hyperoxaluria was associated with inferior graft survival in patients receiving a kidney transplant alone. Long-term graft function was lower in patients with hyperoxaluria, but the risks of acute rejection and death were not different.Copyright © 2020 Elsevier Inc.

Rationale & Objective: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide. Study Design: A cross-sectional survey. Setting & Participants: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018. Outcome(s): Use, availability, accessibility, affordability, and quality of HD care. Analytical Approach: Descriptive statistics. Result(s): Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries. Limitation(s): A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis. Conclusion(s): In summary, findings reveal substantial variations in global HD use, availability, accessibility

Aim: We report the dietary habits of people with advanced CKD and their adherence to country specific Dietary Guidelines. Background(s): Dietary management plays an important role in patients with kidney failure. Current dietary habits of Australians and New Zealanders (ANZ) and Malaysians with advanced chronic kidney disease (CKD stage 4-5) is not well described. Method(s): Participants with CKD 4-5, receiving or planning dialysis commencement within 12-months, enrolled in the FAVOURED trial completed a lifestyle questionnaire at baseline on their dietary habits of key food groups including fruit, vegetables, chicken, meat, fish, and alcohol consumption. Result(s): Of 567 participants (mean age 54.8 +/- 14.3 years, 63% male), 538 (ANZ n = 386, Malaysian n = 152) completed the dietary and lifestyle questionnaire. Dietary fruit and vegetable intakes were higher in ANZ participants; 49% consumed >=2 serves/day of fruit and 61% ate >=2 serves/day of vegetables compared to 24% and 34% of Malaysians respectively (P < 0.0001). Only 4% of ANZ participants met Australian Dietary recommendations of 2 fruit and 5 vegetable serves/day. Fish consumption was higher in Malaysians with 83% consuming >=2 serves/week compared to 21% of ANZ participants (P < 0.0001). Red meat intake was significantly higher in ANZ participants however chicken consumption was similar; 48% consumed >2 chicken serves/week and 65% ate >2 serves/week of red meat compared to 43% and 15% of Malaysians, respectively. Nearly two thirds (62%) of participants in Malaysia and ANZ did not use added salt. Alcohol was consumed by 5% of Malaysians compared with 41% of ANZ participants. Conclusion(s): Significant regional variation in dietary intake for fruit, vegetables and animal protein are described which likely reflect cultural and economic differences. Barriers to meeting recommended dietary intakes requires further study.

Aim: This patient workshop aimed to describe consumer views on key outcomes of interest to inform trial design for a multinational randomised controlled trial comparing safety, clinical and cost efficacy of standard vs incremental haemodialysis. Background(s): Haemodialysis is burdensome, costly and associated with poor quality of life. Starting haemodialysis incrementally at 2 sessions per week may benefit residual kidney function and quality of life whilst remaining safe and cost-effective. Method(s): We convened two 60-minute online workshops in Australia with patients and caregivers to identify key outcomes of interest from a list provided relating to initiation of dialysis using an incremental dialysis approach. New suggestions for key outcomes of interest were also included during the workshop. A points system was used to prioritise outcomes. We identified safety concerns and descriptive themes from the patient's priorities regarding initiation of dialysis. Result(s): This workshop involved 31 attendees (1 caregiver and 30 patients). Patients were currently, previously or soon to be dialysis dependent. All participants agreed that incremental dialysis would be preferred. The top five outcomes of interest were quality of life (56 points), residual kidney function (27 points), mortality (16 points), fluid overload (12.5 points) and ability to work (10 points). Four key themes were identified which underpinned the prioritised outcomes of interest when commencing haemodialysis: unpreparedness and pressure to adapt, disruption to daily living, threats to safety and hope/future planning. Conclusion(s): The concept of incremental haemodialysis is viewed favourably by patients with kidney failure, who considered enriched quality of life as the most important outcome to study. Clinical trials in dialysis must be informed by patient perspectives on key outcomes, trial design, safety and acceptability of intervention.

BACKGROUND: Current health-care models are ill-equipped for managing people with diabetes and chronic kidney disease (CKD). We evaluated the impact of a new diabetes and kidney disease service (DKS) on hospitalisation, mortality, clinical and patient relevant outcomes. METHOD(S): Longitudinal analyses of adult patients with diabetes and CKD (stages 3a to 5) were performed using outpatient and hospitalisation data from January 2015 to October 2018. Data was handled according to whether patients received the DKS intervention (n=196) or standard care (n=7511). The DKS provided patient-centered, coordinated multi-disciplinary assessment and management of patients. Primary analyses examined hospitalisation and mortality rates between the two groups. Secondary analyses evaluated the impact of the DKS on clinical target attainment, changes in eGFR, HbA1c, self-care and patient activation at 12months. RESULT(S): Patients who received the intervention had a higher hospitalisation rate (incidence rate ratio (IRR), 1.20; 95% CI, 1.13 to 1.30; P<0.0001), shorter median length of stay (2days [interquartile range (IQR), 6-1] versus 4days [IQR 9-1]; P<0.0001) and lower all-cause mortality rate (IRR 0.4; 95% CI, 0.29 to 0.64; P<0.0001) than those who received standard care. Improvements in overall self-care (MD 2.26, 95% CI 0.83, 3.69; P<0.001) and in statin use, foot and eye examination were observed. Mean eGFR did not significantly change after 12months (MD 1.30, 95% CI -4.17, 1.67; P=0.40) mls/min per 1.73m2. HbA1c levels significantly decreased by 0.40, 0.35, 0.34 and 0.23% at 3, 6, 9 and 12months follow-up respectively. CONCLUSION(S): A co-designed, person-centred integrated model of care improved all-cause mortality, kidney function, glycaemic control and self-care for patients with diabetes and CKD.Copyright © The Author(s) 2021. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background: The Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) is an international, prospective study following persons treated by peritoneal dialysis (PD) to identify modifiable practices associated with improvements in PD technique and person survival. The aim of this study was to assess the representativeness of the Australian cohort included in PDOPPS compared to the complete Australian PD population, as reported to the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry. Method(s): Adults with at least one PD treatment reported to ANZDATA Registry during the census period of PDOPPS Phase I (November 2014 to April 2018) were compared to the Australian PDOPPS cohort. The primary outcomes were the representativeness of centres and persons. Secondary outcomes explored the association of person characteristics with consent to study participation. Result(s): After data linkage, 511 PDOPPS participants were compared to 5616 Australians treated with PD. Within centres eligible for PDOPPS, selected centres were similar to other Australian centres. The PDOPPS participants' cohort tended to include older persons, more males, a higher proportion of Caucasians and more persons with higher socioeconomic advantage compared to the Australian PD population. Differences in distribution across sex and ethnicities between the PDOPPS cohort and the overall PD population were in part due to the selection and consent processes, during which females and non-Caucasians were more likely to not consent to PDOPPS participation. Conclusion(s): Sampling methods used in PDOPPS allowed for good national representativeness of the included centres. However, representativeness of the unweighted PDOPPS sample was suboptimal in regard to some participant characteristics.Copyright © The Author(s) 2021.

Background: Despite the emergence of diagnostic and clinical utility evidence in nephrology, publicly funded access to genomic testing is restricted in most health care systems. To establish genomic sequencing as a clinical test, an evaluation of cost-effectiveness is urgently required. Method(s): An economic evaluation, informed by a primary clinical study and available clinical evidence and guidelines in nephrology, was performed to evaluate the cost-effectiveness and optimal timing of exome sequencing (ES) in adults and children with suspected monogenic glomerular diseases compared with nongenomic investigations (NGIs). Six diagnostic strategies reflecting current practice and recommended models of care in Australia were modeled: (i) NGIs, (ii) late gene panel followed by ES, (iii) late ES, (iv) early gene panel, (v) early gene panel followed by ES, and (vi) early ES. Result(s): ES with targeted analysis achieved a diagnosis in 23 of 63 (36.5%) adults and 10 of 24 (41.6%) children. NGIs were estimated to diagnose 4.0% of children, with an average estimated cost of AU$6120 per child. Integrating ES as a first-line test in children was cost saving, with an incremental cost saving of AU$3230 per additional diagnosis compared with NGIs. In adults, NGIs was estimated to diagnose 8% of patients, with an average estimated cost of AU$1830 per person. In adults, integrating ES early resulted in an incremental cost per additional diagnosis of AU$5460 relative to NGIs. Conclusion(s): Early ES with targeted analysis was effective for diagnosing monogenic kidney disease, with substantial cost savings in children.Copyright © 2021

BACKGROUND: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas. METHOD(S): As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT). RESULT(S): Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups. CONCLUSION(S): These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.Copyright © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background: Home haemodialysis (HHD) is utilized significantly less often than facility HD globally with few exceptions, despite being associated with improved survival and better quality of life. Previously HHD was exclusively offered to younger patients with a few comorbidities. However, with the increasing burden of end-stage kidney disease (ESKD) alongside an ageing population, increasing numbers of older patients are being treated with HHD. This study aims to re-evaluate survival and related outcomes in the context of this epidemiological shift. Method(s): A matched cohort design was used to compare all-cause mortality, transplantation, average biochemical values and graft survival 6 months post-transplant between HHD and facility HD patients. A total of 181 HHD patients from a major hospital network were included with 413 facility HD patients from the Australia and New Zealand Dialysis and Transplant Registry matched by age, gender and cause of ESKD. Survival analysis and competing risks analysis (for transplantation) were performed. Result(s): After adjusting for body mass index, smoking status, racial group and comorbidities, HHD was associated with a significantly reduced risk of death compared with facility HD patients [hazard ratio 0.47 (95% confidence interval 0.30-0.74)]. Transplantation rates were comparable, with high rates of graft survival at 6 months in both groups. Haemoglobin, calcium and parathyroid hormone levels did not vary significantly. However, HHD patients had significantly lower phosphate levels. Conclusion(s): In this study, improved survival outcomes were observed in patients on home compared with facility dialysis, with comparable rates of transplantation, graft survival and biochemical control.Copyright © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

The COVID-19 pandemic has challenged the delivery of health services. Telehealth allows delivery of care without in-person contacts and minimizes the risk of vial transmission. We aimed to describe the perspectives of kidney transplant recipients on the benefits, challenges, and risks of telehealth. We conducted five online focus groups with 34 kidney transplant recipients who had experienced a telehealth appointment. Transcripts were thematically analyzed. We identified five themes: minimizing burden (convenient and easy, efficiency of appointments, reducing exposure to risk, limiting work disruptions, and alleviating financial burden); attuning to individual context (depending on stability of health, respect patient choice of care, and ensuring a conducive environment); protecting personal connection and trust (requires established rapport with clinicians, hampering honest conversations, diminished attentiveness without incidental interactions, reassurance of follow-up, and missed opportunity to share lived experience); empowerment and readiness (increased responsibility for self-management, confidence in physical assessment, mental preparedness, and forced independence); navigating technical challenges (interrupted communication, new and daunting technologies, and cognizant of patient digital literacy). Telehealth is convenient and minimizes time, financial, and overall treatment burden. Telehealth should ideally be available after the pandemic, be provided by a trusted nephrologist and supported with resources to help patients prepare for appointments.Copyright © 2021 The Authors. Transplant International published by John Wiley & Sons Ltd on behalf of Steunstichting ESOT

Aim: To compare properties of a novel asymmetrical cellulose triacetate (ATA) dialyser (Solacia 190-H, Nipro) to a commonly used high-flux polysulfone dialyser (FX-80, Fresenius) in patients undergoing long-hour (>7 hours) haemodialysis (HD). Background(s): The ATA membrane is highly porous and less prone to performance degradation, compared to a conventional high-flux membrane, potentially resulting in enhanced clearance of middle and large-middle molecules, along with protein bound solutes. Method(s): 10 long-hour home HD patients were included in this randomized cross-over trial. Patients were randomized to 4 weeks of either the 190-H or FX-80 dialyser with subsequent cross-over to the other. The removal of small (urea, phosphate and creatinine), middle and large-middle molecules (beta-2 microglobulin [B2M], indoxyl sulfate [IS], albumin) and markers of inflammation (interleukin-6 [IL-6], malondialdehyde-modified low density lipoprotein [MDA-LDL]), were evaluated during the mid-week dialysis session of the fourth week of each dialyser sequence. All results are expressed as mean differences in corresponding reduction ratios (RR) between the FX-80 and 190-H dialysers after 8 hours of dialysis. Result(s): There was no significant difference in reduction in clearance of small molecules, with a RR difference for urea -2.43 (p = 0.19), creatinine -1.82 (p = 0.28) and phosphate -2.61 (p = 0.55). Similarly, there was no difference in clearance of middle and large-middle molecules with a RR difference for B2M 2.63 (p = 0.22), IS 2.48 (p = 0.69) and albumin -0.15 (p = 0.96). There was also no difference in expression of inflammatory markers with RR for IL-6 18.8 (p = 0.44) and MDA-LDL -8.0 (p = 0.3). Conclusion(s): Our study did not demonstrate a difference in clearance of small, middle and large-middle molecules, nor the expression of markers of inflammation between the FX-80 and H-190 dialysers.

Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Method(s): We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Result(s): We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion(s): Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.Copyright © 2021 International Society of Nephrology

Background: Dialysate sodium (DNa) prescription policy differs between haemodialysis (HD) units, and the optimal DNa remains uncertain. We sought to summarize the evidence on the agreement between prescribed and delivered DNa, and whether the relationship varied according to prescribed DNa. Method(s): We searched MEDLINE and PubMed from inception to 26 February 2020 for studies reporting measured and prescribed DNa. We analysed results reported in aggregate with random-effects meta-Analysis. We analysed results reported by individual sample, using mixed-effects Bland-Altman analysis and linear regression. Pre-specified subgroup analyses included method of sodium measurement, dialysis machine manufacturer and proportioning method. Result(s): Seven studies, representing 908 dialysate samples from 10 HD facilities (range 16-133 samples), were identified. All but one were single-centre studies. Studies were of low to moderate quality. Overall, there was no statistically significant difference between measured and prescribed DNa {mean difference = 0.73 mmol/L [95% confidence interval (CI)-1.12 to 2.58; P = 0.44]} but variability across studies was substantial (I2 = 99.3%). Among individually reported samples (n = 295), measured DNa was higher than prescribed DNa by 1.96 mmol/L (95% CI 0.23-3.69) and the 95% limits of agreement ranged from-3.97 to 7.88 mmol/L. Regression analysis confirmed a strong relationship between prescribed and measured DNa, with a slope close to 1:1 (beta = 1.16, 95% CI 1.06-1.27; P < 0.0001). Conclusion(s): A limited number of studies suggest that, on average, prescribed and measured DNa are similar. However, between-and within-study differences were large. Further consideration of the precision of delivered DNa is required to inform rational prescribing. Copyright © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

BACKGROUND: Dialysate sodium (DNa) prescription policy differs between haemodialysis (HD) units, and the optimal DNa remains uncertain. We sought to summarize the evidence on the agreement between prescribed and delivered DNa, and whether the relationship varied according to prescribed DNa. METHOD(S): We searched MEDLINE and PubMed from inception to 26 February 2020 for studies reporting measured and prescribed DNa. We analysed results reported in aggregate with random-effects meta-analysis. We analysed results reported by individual sample, using mixed-effects Bland-Altman analysis and linear regression. Pre-specified subgroup analyses included method of sodium measurement, dialysis machine manufacturer and proportioning method. RESULT(S): Seven studies, representing 908 dialysate samples from 10 HD facilities (range 16-133 samples), were identified. All but one were single-centre studies. Studies were of low to moderate quality. Overall, there was no statistically significant difference between measured and prescribed DNa {mean difference=0.73mmol/L [95% confidence interval (CI) -1.12 to 2.58; P=0.44]} but variability across studies was substantial (I2=99.3%). Among individually reported samples (n=295), measured DNa was higher than prescribed DNa by 1.96mmol/L (95% CI 0.23-3.69) and the 95% limits of agreement ranged from -3.97 to 7.88mmol/L. Regression analysis confirmed a strong relationship between prescribed and measured DNa, with a slope close to 1:1 (beta=1.16, 95% CI 1.06-1.27; P<0.0001). CONCLUSION(S): A limited number of studies suggest that, on average, prescribed and measured DNa are similar. However, between- and within-study differences were large. Further consideration of the precision of delivered DNa is required to inform rational prescribing.Copyright © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Introduction: The 3-day interdialytic interval (IDI) is associated with high interdialytic weight gain (IDWG), but little is known about the effect of public or religious holidays on IDWG. Consequently, we evaluated the impact of the "Christmas holiday effect" on IDWG of hemodialysis patients. Method(s): A retrospective cohort study of adult hemodialysis patients (over 18 years) was conducted across five dialysis units in Australia. Demographic and clinical data were collected from electronic medical records. IDWG was established for three time points; regular 3-day IDI, 2-day IDI preceding the Christmas holiday and a 3-day IDI that included the Christmas holiday. Paired t-tests and logistic regression were used to compare differences in mean IDWG before and after the Christmas holiday and to examine factors associated with high IDWG, respectively. Finding(s): Two hundred and fifty-two patients, 69% of whom were male, with mean (SD) age of 65.4 +/- 15.3 years, were studied. Most had end-stage kidney disease due to diabetes (44%), and they had been on hemodialysis for a median of 25.5 (IQR, 60-10) months. There was a significant increase in absolute IDWG (MD 0.21 kg, 95% CI -0.07 to 0.36; P = 0.004) and relative IDWG (MD 0.3%, 95% CI 0.10-0.40; P = 0.01) after the holiday 3-day IDI compared with the regular 3-day IDI. Older age (OR 0.12; 95% CI 0.02-0.55) and a unit increase in hemoglobin (OR 0.94; 95% CI 0.89-0.99) were associated with lower odds of high relative IDWG while speaking a language other than English increased the odds for high relative IDWG (OR 5.03; 95% CI 1.12-22.65). Conclusion(s): Absolute and relative IDWG increased significantly after the Christmas holiday. Individualizing dialysis needs may improve outcomes for these patients.Copyright © 2020 International Society for Hemodialysis

Background: End-stage kidney disease secondary to hyperoxaluria presents a major challenge for transplant physicians given concern regarding disease recurrence. Few contemporary studies have reported long-term outcomes following transplantation in this population. Method(s): This study examined the outcomes of all adult patients with end-stage kidney disease secondary to hyperoxaluria who received a kidney or combined liver-kidney transplant in Australia and New Zealand between 1965 and 2015. Patients with hyperoxaluria were propensity score matched to control patients with reflux nephropathy. The primary outcome was graft survival. Secondary outcomes included graft function, acute rejection, and patient survival. Result(s): Nineteen transplants performed in 16 patients with hyperoxaluria were matched to 57 transplants in patients with reflux nephropathy. Graft survival was inferior in patients with hyperoxaluria receiving a kidney transplant alone (subhazard ratio [SHR] = 3.83, 95% confidence interval [CI], 1.22-12.08, P = .02) but not in those receiving a combined liver-kidney transplant (SHR = 0.63, 95% CI, 0.08-5.21, P =. 67). Graft failure risk was particularly high in patients with hyperoxaluria receiving a kidney transplant alone after more than 1 year of renal replacement therapy (SHR = 8.90, 95% CI, 2.35-33.76, P = .001). Posttransplant estimated glomerular filtration rate was lower in patients with hyperoxaluria (10.97 mL/min/1.73 m2, 95% CI, 0.53-21.42, P = .04). There was no difference between groups in the risk of acute rejection or death with a functioning graft. Conclusion(s): Compared to reflux nephropathy, hyperoxaluria was associated with inferior graft survival in patients receiving a kidney transplant alone. Long-term graft function was lower in patients with hyperoxaluria, but the risks of acute rejection and death were not different.Copyright © 2020 Elsevier Inc.

Aim: This patient workshop aimed to describe consumer views on key outcomes of interest to inform trial design for a multinational randomised controlled trial comparing safety, clinical and cost efficacy of standard vs incremental haemodialysis. Background(s): Haemodialysis is burdensome, costly and associated with poor quality of life. Starting haemodialysis incrementally at 2 sessions per week may benefit residual kidney function and quality of life whilst remaining safe and cost-effective. Method(s): We convened two 60-minute online workshops in Australia with patients and caregivers to identify key outcomes of interest from a list provided relating to initiation of dialysis using an incremental dialysis approach. New suggestions for key outcomes of interest were also included during the workshop. A points system was used to prioritise outcomes. We identified safety concerns and descriptive themes from the patient's priorities regarding initiation of dialysis. Result(s): This workshop involved 31 attendees (1 caregiver and 30 patients). Patients were currently, previously or soon to be dialysis dependent. All participants agreed that incremental dialysis would be preferred. The top five outcomes of interest were quality of life (56 points), residual kidney function (27 points), mortality (16 points), fluid overload (12.5 points) and ability to work (10 points). Four key themes were identified which underpinned the prioritised outcomes of interest when commencing haemodialysis: unpreparedness and pressure to adapt, disruption to daily living, threats to safety and hope/future planning. Conclusion(s): The concept of incremental haemodialysis is viewed favourably by patients with kidney failure, who considered enriched quality of life as the most important outcome to study. Clinical trials in dialysis must be informed by patient perspectives on key outcomes, trial design, safety and acceptability of intervention.

Background: The Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) is an international, prospective study following persons treated by peritoneal dialysis (PD) to identify modifiable practices associated with improvements in PD technique and person survival. The aim of this study was to assess the representativeness of the Australian cohort included in PDOPPS compared to the complete Australian PD population, as reported to the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry. Method(s): Adults with at least one PD treatment reported to ANZDATA Registry during the census period of PDOPPS Phase I (November 2014 to April 2018) were compared to the Australian PDOPPS cohort. The primary outcomes were the representativeness of centres and persons. Secondary outcomes explored the association of person characteristics with consent to study participation. Result(s): After data linkage, 511 PDOPPS participants were compared to 5616 Australians treated with PD. Within centres eligible for PDOPPS, selected centres were similar to other Australian centres. The PDOPPS participants' cohort tended to include older persons, more males, a higher proportion of Caucasians and more persons with higher socioeconomic advantage compared to the Australian PD population. Differences in distribution across sex and ethnicities between the PDOPPS cohort and the overall PD population were in part due to the selection and consent processes, during which females and non-Caucasians were more likely to not consent to PDOPPS participation. Conclusion(s): Sampling methods used in PDOPPS allowed for good national representativeness of the included centres. However, representativeness of the unweighted PDOPPS sample was suboptimal in regard to some participant characteristics.Copyright © The Author(s) 2021.

Background: Dialysate sodium (DNa) prescription policy differs between haemodialysis (HD) units, and the optimal DNa remains uncertain. We sought to summarize the evidence on the agreement between prescribed and delivered DNa, and whether the relationship varied according to prescribed DNa. Method(s): We searched MEDLINE and PubMed from inception to 26 February 2020 for studies reporting measured and prescribed DNa. We analysed results reported in aggregate with random-effects meta-Analysis. We analysed results reported by individual sample, using mixed-effects Bland-Altman analysis and linear regression. Pre-specified subgroup analyses included method of sodium measurement, dialysis machine manufacturer and proportioning method. Result(s): Seven studies, representing 908 dialysate samples from 10 HD facilities (range 16-133 samples), were identified. All but one were single-centre studies. Studies were of low to moderate quality. Overall, there was no statistically significant difference between measured and prescribed DNa {mean difference = 0.73 mmol/L [95% confidence interval (CI)-1.12 to 2.58; P = 0.44]} but variability across studies was substantial (I2 = 99.3%). Among individually reported samples (n = 295), measured DNa was higher than prescribed DNa by 1.96 mmol/L (95% CI 0.23-3.69) and the 95% limits of agreement ranged from-3.97 to 7.88 mmol/L. Regression analysis confirmed a strong relationship between prescribed and measured DNa, with a slope close to 1:1 (beta = 1.16, 95% CI 1.06-1.27; P < 0.0001). Conclusion(s): A limited number of studies suggest that, on average, prescribed and measured DNa are similar. However, between-and within-study differences were large. Further consideration of the precision of delivered DNa is required to inform rational prescribing. Copyright © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Method(s): We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Result(s): We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion(s): Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.Copyright © 2021 International Society of Nephrology

Aim: To describe the phenotypic spectrum in patients with diagnostic type 4 collagen variants, and to determine phenocopies of Alport Syndrome (AS). Background(s): AS is the second most common form of genetic kidney disease (GKD). Recently, Medicare approved testing for the three genes associated with AS. Pursuing genetic diagnosis has important clinical implications. Method(s): We compared the suspected diagnosis prior to ES with the genomic diagnosis in patients with suspected AS from a cohort of 204 patients with suspected GKD. We also compared the suspected diagnosis to the molecular diagnosis in patients who were found to have type 4 collagen variants following ES. Result(s): 80/204(39%) had diagnostic variants in genes related to kidney disease. 26/80(33%) had diagnostic type 4 collagen variants. Most patients (n = 13) had autosomal dominant (AD) COL4A3/4 nephropathy. Eleven had X-Linked dominant AS and 2 had autosomal recessive AS. ES reclassified the diagnosis in 7/26(27%) of patients with type 4 collagen variants. Furthermore, 3 patients who had clinical symptoms suspicious of AS were found to have an alternate diagnosis following ES (2 had X-linked recessive Dent Disease and 1 had AD hypoparathyroidism, sensorineural deafness and renal dysplasia). Conclusion(s): ES revealed type 4 collagen variants in 6 patients with alternate clinical diagnoses suspected at referral. Three additional patients who were thought to have AS were subsequently given an alternate diagnosis. We suggest that AS is underdiagnosed, and testing should be considered in patients with a suspected monogenic cause of hematuria. We also highlight the importance of expanding analysis to additional genes in the evaluation of patients with suspected AS, in addition to those reimbursed by Medicare. ES allows easier subsequent reanalysis of genomic data.

Purpose: To determine the diagnostic yield and clinical impact of exome sequencing (ES) in patients with suspected monogenic kidney disease. Method(s): We performed clinically accredited singleton ES in a prospectively ascertained cohort of 204 patients assessed in multidisciplinary renal genetics clinics at four tertiary hospitals in Melbourne, Australia. Result(s): ES identified a molecular diagnosis in 80 (39%) patients, encompassing 35 distinct genetic disorders. Younger age at presentation was independently associated with an ES diagnosis (p < 0.001). Of those diagnosed, 31/80 (39%) had a change in their clinical diagnosis. ES diagnosis was considered to have contributed to management in 47/80 (59%), including negating the need for diagnostic renal biopsy in 10/80 (13%), changing surveillance in 35/80 (44%), and changing the treatment plan in 16/80 (20%). In cases with no change to management in the proband, the ES result had implications for the management of family members in 26/33 (79%). Cascade testing was subsequently offered to 40/80 families (50%). Conclusion(s): In this pragmatic pediatric and adult cohort with suspected monogenic kidney disease, ES had high diagnostic and clinical utility. Our findings, including predictors of positive diagnosis, can be used to guide clinical practice and health service design.Copyright © 2020, The Author(s).

Rationale & Objective: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe. Study Design: A cross-sectional survey. Setting & Participants: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018. Outcome(s): PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures. Analytical Approach: Descriptive statistics. Result(s): Responses were received from 88% (n = 160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n = 156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for <=10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes. Limitation(s): Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data. Conclusion(s): Large inter- and intraregional disparities exist in PD availability, acce

Rationale & Objective: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide. Study Design: A cross-sectional survey. Setting & Participants: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018. Outcome(s): Use, availability, accessibility, affordability, and quality of HD care. Analytical Approach: Descriptive statistics. Result(s): Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries. Limitation(s): A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis. Conclusion(s): In summary, findings reveal substantial variations in global HD use, availability, accessibility

Introduction: Genomic testing is becoming widely available as a diagnostic tool, although widespread implementation is not yet established in nephrology. Method(s): An anonymous electronic survey was administered to investigate experience and confidence with genomic tests, perceived clinical utility of genomic services, preferences for service delivery models, and readiness for implementation among nephrologists. Questions were guided by a comprehensive literature review and published tools, including a validated theoretical framework for implementation of genomic medicine: Consolidated Framework for Implementation Research (CFIR). Result(s): Responses were received from 224 clinicians, of which 172 were eligible for analysis. Most clinicians (132 [76%]) had referred at least one patient to a genetics clinic. Despite most clinicians (136 [85%]) indicating that they believed genetic testing would be useful, only 39 (23%) indicated they felt confident to use results of genomic testing, with pediatric clinicians feeling more confident compared with adult clinicians (12 of 20 [60%] vs. 27 of 149 [18%]), P < 0.01, Fisher exact). A multidisciplinary renal genetics clinic was the preferred model among clinicians surveyed (98 of 172 [57%]). A key implementation barrier highlighted related to the hospital or organizational culture and/or environment. Specific barriers noted in quantitative and qualitative responses included inadequate staffing, learning resources, and funding. Conclusion(s): Our findings suggest support for genomic testing among nephrologists, with a strong preference for a multidisciplinary model (involving a nephrologist, clinical geneticist, and genetic counselor). Broad-ranging interventions are urgently required to shift the current culture and ensure successful implementation of genomics in nephrology, including reducing knowledge gaps, increased funding and resources, disease-specific guidelines, and streamlining of testing processes.Copyright © 2020

Background: Podocyte loss is a key event in primary focal segmental glomerulosclerosis (FSGS). Common first-line therapy for patients with primary FSGS involves steroid therapy with or without blood pressure control; however 40-70% of patients achieve no remission. Animal studies have shown that treatment efficacy is achieved partly through preservation of podocyte number, as well as podocyte protective effects. Animal studies have also determined that podocyte number and density are predictive of FSGS severity. Therefore, this study aimed to determine if podocyte number and density can predict the response to therapy in patients with primary FSGS. Method(s): A retrospective cohort study of renal biopsies was conducted from 2009-2020 in Melbourne, Australia at a tertiary hospital (Monash Medical Centre). Patients diagnosed with primary FSGS were screened (n=84). Patients were excluded for lack of consent for samples to be used for research purposes (n=38), risks of other forms of FSGS (n=13), insufficient clinical data available (n=2), no biopsy tissue available (n=7) or <6 glomerular profiles available in the biopsy (n=5). Included patients were allocated into groups of treatment responders (n=11) or non-responders (n=8) based on urinary/serum data 6 months following initial diagnosis and commencement of treatment. Biopsies were immunofluorescently stained for podocyte-specific markers. Model-based stereology was used to estimate podometrics. Sections were re-stained with PAS to measure the glomerulosclerotic index (GSI). Result(s): Podocyte number per glomerulus in responders (347 (215-606); median (IQR)) was 45% higher than in non-responders (190; 143-263) (P=0.03). Podocyte density in responders (76; 58-142 per 106mum3 of glomerular volume) was similar to nonresponders (66; 44-88 per 106mum3 of glomerular volume) (P=0.38). GSI was significantly higher in non-responder patients (1.1; 0.6-2.3) than responders (0.6; 0.2-0.9) (P=0.04), and was significantly and nega

Aim: We report the dietary habits of people with advanced CKD and their adherence to country specific Dietary Guidelines. Background(s): Dietary management plays an important role in patients with kidney failure. Current dietary habits of Australians and New Zealanders (ANZ) and Malaysians with advanced chronic kidney disease (CKD stage 4-5) is not well described. Method(s): Participants with CKD 4-5, receiving or planning dialysis commencement within 12-months, enrolled in the FAVOURED trial completed a lifestyle questionnaire at baseline on their dietary habits of key food groups including fruit, vegetables, chicken, meat, fish, and alcohol consumption. Result(s): Of 567 participants (mean age 54.8 +/- 14.3 years, 63% male), 538 (ANZ n = 386, Malaysian n = 152) completed the dietary and lifestyle questionnaire. Dietary fruit and vegetable intakes were higher in ANZ participants; 49% consumed >=2 serves/day of fruit and 61% ate >=2 serves/day of vegetables compared to 24% and 34% of Malaysians respectively (P < 0.0001). Only 4% of ANZ participants met Australian Dietary recommendations of 2 fruit and 5 vegetable serves/day. Fish consumption was higher in Malaysians with 83% consuming >=2 serves/week compared to 21% of ANZ participants (P < 0.0001). Red meat intake was significantly higher in ANZ participants however chicken consumption was similar; 48% consumed >2 chicken serves/week and 65% ate >2 serves/week of red meat compared to 43% and 15% of Malaysians, respectively. Nearly two thirds (62%) of participants in Malaysia and ANZ did not use added salt. Alcohol was consumed by 5% of Malaysians compared with 41% of ANZ participants. Conclusion(s): Significant regional variation in dietary intake for fruit, vegetables and animal protein are described which likely reflect cultural and economic differences. Barriers to meeting recommended dietary intakes requires further study.

BACKGROUND: Current health-care models are ill-equipped for managing people with diabetes and chronic kidney disease (CKD). We evaluated the impact of a new diabetes and kidney disease service (DKS) on hospitalisation, mortality, clinical and patient relevant outcomes. METHOD(S): Longitudinal analyses of adult patients with diabetes and CKD (stages 3a to 5) were performed using outpatient and hospitalisation data from January 2015 to October 2018. Data was handled according to whether patients received the DKS intervention (n=196) or standard care (n=7511). The DKS provided patient-centered, coordinated multi-disciplinary assessment and management of patients. Primary analyses examined hospitalisation and mortality rates between the two groups. Secondary analyses evaluated the impact of the DKS on clinical target attainment, changes in eGFR, HbA1c, self-care and patient activation at 12months. RESULT(S): Patients who received the intervention had a higher hospitalisation rate (incidence rate ratio (IRR), 1.20; 95% CI, 1.13 to 1.30; P<0.0001), shorter median length of stay (2days [interquartile range (IQR), 6-1] versus 4days [IQR 9-1]; P<0.0001) and lower all-cause mortality rate (IRR 0.4; 95% CI, 0.29 to 0.64; P<0.0001) than those who received standard care. Improvements in overall self-care (MD 2.26, 95% CI 0.83, 3.69; P<0.001) and in statin use, foot and eye examination were observed. Mean eGFR did not significantly change after 12months (MD 1.30, 95% CI -4.17, 1.67; P=0.40) mls/min per 1.73m2. HbA1c levels significantly decreased by 0.40, 0.35, 0.34 and 0.23% at 3, 6, 9 and 12months follow-up respectively. CONCLUSION(S): A co-designed, person-centred integrated model of care improved all-cause mortality, kidney function, glycaemic control and self-care for patients with diabetes and CKD.Copyright © The Author(s) 2021. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Aim: To compare properties of a novel asymmetrical cellulose triacetate (ATA) dialyser (Solacia 190-H, Nipro) to a commonly used high-flux polysulfone dialyser (FX-80, Fresenius) in patients undergoing long-hour (>7 hours) haemodialysis (HD). Background(s): The ATA membrane is highly porous and less prone to performance degradation, compared to a conventional high-flux membrane, potentially resulting in enhanced clearance of middle and large-middle molecules, along with protein bound solutes. Method(s): 10 long-hour home HD patients were included in this randomized cross-over trial. Patients were randomized to 4 weeks of either the 190-H or FX-80 dialyser with subsequent cross-over to the other. The removal of small (urea, phosphate and creatinine), middle and large-middle molecules (beta-2 microglobulin [B2M], indoxyl sulfate [IS], albumin) and markers of inflammation (interleukin-6 [IL-6], malondialdehyde-modified low density lipoprotein [MDA-LDL]), were evaluated during the mid-week dialysis session of the fourth week of each dialyser sequence. All results are expressed as mean differences in corresponding reduction ratios (RR) between the FX-80 and 190-H dialysers after 8 hours of dialysis. Result(s): There was no significant difference in reduction in clearance of small molecules, with a RR difference for urea -2.43 (p = 0.19), creatinine -1.82 (p = 0.28) and phosphate -2.61 (p = 0.55). Similarly, there was no difference in clearance of middle and large-middle molecules with a RR difference for B2M 2.63 (p = 0.22), IS 2.48 (p = 0.69) and albumin -0.15 (p = 0.96). There was also no difference in expression of inflammatory markers with RR for IL-6 18.8 (p = 0.44) and MDA-LDL -8.0 (p = 0.3). Conclusion(s): Our study did not demonstrate a difference in clearance of small, middle and large-middle molecules, nor the expression of markers of inflammation between the FX-80 and H-190 dialysers.

BACKGROUND: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas. METHOD(S): As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT). RESULT(S): Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups. CONCLUSION(S): These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.Copyright © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background: Home haemodialysis (HHD) is utilized significantly less often than facility HD globally with few exceptions, despite being associated with improved survival and better quality of life. Previously HHD was exclusively offered to younger patients with a few comorbidities. However, with the increasing burden of end-stage kidney disease (ESKD) alongside an ageing population, increasing numbers of older patients are being treated with HHD. This study aims to re-evaluate survival and related outcomes in the context of this epidemiological shift. Method(s): A matched cohort design was used to compare all-cause mortality, transplantation, average biochemical values and graft survival 6 months post-transplant between HHD and facility HD patients. A total of 181 HHD patients from a major hospital network were included with 413 facility HD patients from the Australia and New Zealand Dialysis and Transplant Registry matched by age, gender and cause of ESKD. Survival analysis and competing risks analysis (for transplantation) were performed. Result(s): After adjusting for body mass index, smoking status, racial group and comorbidities, HHD was associated with a significantly reduced risk of death compared with facility HD patients [hazard ratio 0.47 (95% confidence interval 0.30-0.74)]. Transplantation rates were comparable, with high rates of graft survival at 6 months in both groups. Haemoglobin, calcium and parathyroid hormone levels did not vary significantly. However, HHD patients had significantly lower phosphate levels. Conclusion(s): In this study, improved survival outcomes were observed in patients on home compared with facility dialysis, with comparable rates of transplantation, graft survival and biochemical control.Copyright © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

The COVID-19 pandemic has challenged the delivery of health services. Telehealth allows delivery of care without in-person contacts and minimizes the risk of vial transmission. We aimed to describe the perspectives of kidney transplant recipients on the benefits, challenges, and risks of telehealth. We conducted five online focus groups with 34 kidney transplant recipients who had experienced a telehealth appointment. Transcripts were thematically analyzed. We identified five themes: minimizing burden (convenient and easy, efficiency of appointments, reducing exposure to risk, limiting work disruptions, and alleviating financial burden); attuning to individual context (depending on stability of health, respect patient choice of care, and ensuring a conducive environment); protecting personal connection and trust (requires established rapport with clinicians, hampering honest conversations, diminished attentiveness without incidental interactions, reassurance of follow-up, and missed opportunity to share lived experience); empowerment and readiness (increased responsibility for self-management, confidence in physical assessment, mental preparedness, and forced independence); navigating technical challenges (interrupted communication, new and daunting technologies, and cognizant of patient digital literacy). Telehealth is convenient and minimizes time, financial, and overall treatment burden. Telehealth should ideally be available after the pandemic, be provided by a trusted nephrologist and supported with resources to help patients prepare for appointments.Copyright © 2021 The Authors. Transplant International published by John Wiley & Sons Ltd on behalf of Steunstichting ESOT

BACKGROUND: Dialysate sodium (DNa) prescription policy differs between haemodialysis (HD) units, and the optimal DNa remains uncertain. We sought to summarize the evidence on the agreement between prescribed and delivered DNa, and whether the relationship varied according to prescribed DNa. METHOD(S): We searched MEDLINE and PubMed from inception to 26 February 2020 for studies reporting measured and prescribed DNa. We analysed results reported in aggregate with random-effects meta-analysis. We analysed results reported by individual sample, using mixed-effects Bland-Altman analysis and linear regression. Pre-specified subgroup analyses included method of sodium measurement, dialysis machine manufacturer and proportioning method. RESULT(S): Seven studies, representing 908 dialysate samples from 10 HD facilities (range 16-133 samples), were identified. All but one were single-centre studies. Studies were of low to moderate quality. Overall, there was no statistically significant difference between measured and prescribed DNa {mean difference=0.73mmol/L [95% confidence interval (CI) -1.12 to 2.58; P=0.44]} but variability across studies was substantial (I2=99.3%). Among individually reported samples (n=295), measured DNa was higher than prescribed DNa by 1.96mmol/L (95% CI 0.23-3.69) and the 95% limits of agreement ranged from -3.97 to 7.88mmol/L. Regression analysis confirmed a strong relationship between prescribed and measured DNa, with a slope close to 1:1 (beta=1.16, 95% CI 1.06-1.27; P<0.0001). CONCLUSION(S): A limited number of studies suggest that, on average, prescribed and measured DNa are similar. However, between- and within-study differences were large. Further consideration of the precision of delivered DNa is required to inform rational prescribing.Copyright © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background and objectives Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. Design, setting, participants, & measurements We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. Results Across 16 focus groups, 134 participants (range, 19–85 years old; 51%women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked out comes were kidney function(importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: Constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. Conclusions Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact. © 2020 by the American Society of Nephrology.

Background and objectives Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. Design, setting, participants, & measurements We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. Results Across 16 focus groups, 134 participants (range, 19-85 years old; 51%women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked out comes were kidney function(importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: Constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. Conclusions Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.Copyright © 2020 by the American Society of Nephrology.

BACKGROUND: Home haemodialysis (HHD) is utilised significantly less often than facility haemodialysis globally with few exceptions despite being associated with improved survival, and better quality of life. Previously, HHD was exclusively offered to younger patients with few comorbidities. However, with the increasing burden of end-stage kidney disease (ESKD) alongside an ageing population, increasing numbers of older patients are being treated with HHD. This study aims to re-evaluate survival and related outcomes in the context of this epidemiological shift. METHOD(S): A matched cohort design was used to compare all-cause mortality, transplantation, average biochemical values and graft survival 6months post-transplant between HHD and facility haemodialysis patients. 181 HHD patients from a major hospital network were included, with 413 facility haemodialysis patients from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) matched by age, gender, and cause of ESKD. Survival analysis and competing risks analysis (for transplantation) were performed. RESULT(S): After adjusting for BMI, smoking status, racial group, and comorbidities, HHD was associated with significantly reduced risk of death compared to facility HD patients (HR=0.47, 95% CI 0.30-0.74). Transplantation rates were comparable, with high rates of graft survival at 6months in both groups. Haemoglobin, calcium, and parathyroid hormone levels did not vary significantly. However, home HD patients had significantly lower phosphate levels. CONCLUSION(S): In this study, improved survival outcomes were observed in patients on home compared to facility dialysis, with comparable rates of transplantation, graft survival and biochemical control.Copyright © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Background Hyperphosphatemia is associated with increased fibroblast growth factor 23 (FGF23), arterial calcification, and cardiovascular mortality. Effects of phosphate-lowering medication on vascular calcification and arterial stiffness in CKD remain uncertain. Methods To assess the effects of non-calcium-based phosphate binders on intermediate cardiovascular markers, we conducted a multicenter, double-blind trial, randomizing 278 participants with stage 3b or 4 CKD and serum phosphate.1.00 mmol/L (3.10 mg/dl) to 500 mg lanthanum carbonate or matched placebo thrice daily for 96 weeks. We analyzed the primary outcome, carotid-femoral pulse wave velocity, using a linear mixed effects model for repeated measures. Secondary outcomes included abdominal aortic calcification and serum and urine markers of mineral metabolism. Results A total of 138 participants received lanthanum and 140 received placebo (mean age 63.1 years; 69% male, 64% White). Mean eGFR was 26.6 ml/min per 1.73 m2; 45% of participants had diabetes and 32% had cardiovascular disease. Mean serum phosphate was 1.25 mmol/L (3.87 mg/dl), mean pulse wave velocity was 10.8 m/s, and 81.3% had abdominal aortic calcification at baseline. At 96 weeks, pulse wave velocity did not differ significantly between groups, nor did abdominal aortic calcification, serum phosphate, parathyroid hormone, FGF23, and 24-hour urinary phosphate. Serious adverse events occurred in 63 (46%) participants prescribed lanthanum and 66 (47%) prescribed placebo. Although recruitment to target was not achieved, additional analysis suggested this was unlikely to have significantly affected the principle findings. Conclusions In patients with stage 3b/4 CKD, treatment with lanthanum over 96 weeks did not affect arterial stiffness or aortic calcification compared with placebo. These findings do not support the role of intestinal phosphate binders to reduce cardiovascular risk in patients with CKD who have normophosphatemia. Clinical Trial r