Publications

Background: Patient-reported outcome measures can highlight the impact of kidney failure and kidney replacement therapy on a person's health-related quality of life and symptom burden. But their implementation is limited and heterogeneous within Australian and New Zealand kidney care.Objective: Identify one generic health-related quality of life and one kidney-specific patient-reported outcome measure suitable for inclusion within the Australia and New Zealand Dialysis and Transplant Registry, including the mode and location of administration, timing and frequency of completion, and data presentation format.Design:A three-phase modified Delphi study comprising two online surveys and a virtual consensus workshop.Participants: Patients, carers, clinicians, researchers, and kidney registry staff from Australia, New Zealand and the United Kingdom.Measurements: Participants voted on: their preferred patient-reported outcome measures, the mode and location of administration, timing and frequency of completion, and how they would like the data presented at the individual and aggregated levels.Results: Fifty-three people consented to the study, 41 completed Survey #1, 43 completed Survey #2, and 30 attended the consensus workshop. The EuroQOL-5 Dimensions-5 Levels for generic health-related quality of life and the Integrated Palliative care Outcome Scale-Renal for kidney-specific outcomes reached majority vote. Participants agreed on electronic completion at home or in the dialysis unit to allow for staff support if needed. Consensus was not reached on the frequency of administration; most voted for completion at the commencement of dialysis or transplant and 6-monthly thereafter as a minimum.Conclusion: The EuroQOL-5 Dimensions-5 Levels and the Integrated Palliative care Outcome Scale-Renal were recommended for collection by the Australia and New Zealand Dialysis and Transplant Registry. These will enable standardised, meaningful assessments of patients' health outcomes and support continuous quality improvement across kidney care services bi-nationally.

Background: Candidates awaiting repeat kidney transplantation face substantial immunological barriers due to prior human leukocyte antigen (HLA) allo-sensitisation. Re-exposure to previously mismatched HLA antigens may increase the risk of acute rejection and premature graft loss. Although avoidance of repeat HLA mismatches (RMM) has been standard practice, emerging evidence suggests this risk varies according to the specific HLA allelic RMM and anti-HLA antibody profile to the RMM. Here we describe the protocol for a retrospective registry-based cohort study that aims to determine the differences in graft outcome between recipients who received kidney transplants with and without RMM, and to examine the immunogenicity of RMM that are associated with allo-sensitisation.Methods: Using linked data between the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and Australian organ waitlisting and matching system (2012-2023), we will evaluate the association between Class I and II HLA RMM and the risk of acute rejection and graft loss using Cox regression and competing risk models in recipients who have received repeat kidney transplants in Australia. Epitope analysis of each RMM will be examined.Discussion: This study will improve understanding of the impact of RMM on kidney transplant outcomes and identify higher immunological risk RMM associated with poorer graft outcomes.

BackgroundTransplant recipients have an increased risk of skin cancer and related death compared with the general population. How demographics or geography impact on mortality is unclear. Understanding these will help identify groups at highest risk of skin cancer death.ObjectivesTo estimate skin cancer mortality rates among kidney transplant recipients in Australia and New Zealand and describe excess mortality by demographics and geography, relative to the general population, and change over time.MethodsWe linked kidney transplant recipients from the Australia and New Zealand Dialysis and Transplant Registry with National Death Registers in Australia and New Zealand from 1990 to 2019. We identified deaths from melanoma (International Classification of Diseases 10th Revision code C43), keratinocyte cancer (KC; C44) and carcinoma in situ (D04), and estimated absolute mortality per 100 000 person-years of follow-up (PY). We used indirect standardization to estimate standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) for kidney transplant recipients compared with the general population by sex, age at death, decade of death, and New Zealand or Australian state.ResultsWe included 21 503 individuals who received their first kidney transplant between 1990 and 2019. There were 251 deaths from skin cancer, 82 from melanoma and 169 from KC, over 212 317 PY of follow-up. The absolute skin cancer mortality rate was 118.2 per 100 000 PY (95% CI 104.1–134.2), 38.6 per 100 000 PY for melanoma (95% CI 31.1–48.0) and 79.6 per 100 000 PY for KC (95% CI 68.5–92.6). Skin cancer mortality was 11.1 times higher in kidney transplant recipients compared with the general population (SMR) overall, 4.5 times higher for melanoma and 34.5 times higher for KC. Excess skin cancer mortality relative to the general population was observed in both sexes, across all age groups, residential areas and decades of follow-up. Excess mortality was highest in regions with high ultraviolet radiation (UVR) indices – the Australian states of Queensland (SMR 14.8, 95% CI 11.7–18.8) and Western Australia (SMR 13.1, 95% CI 8.7–19.7), and in New Zealand (SMR 11.0, 95% CI 8.3–14.6).ConclusionsKidney transplant recipients are at increased risk of skin cancer death, especially from KC, in all demographics and regions in Australia and New Zealand, especially those with high UVR indices. Enhanced surveillance and rapid treatment entry are warranted.

Kidney paired donation (KPD) programs are organized in various countries to facilitate the donation of kidneys from willing but incompatible donors by matching them with pairs in similar situations. These programs often struggle with an accumulation of difficult-to-match recipients and small pools of incompatible pairs. To address this, several international collaborations have emerged to expand the pool sizes and increase the number of transplants by "exchanging" donors' kidneys across countries. We identified 4 established international KPD programs, each supported by protocols and agreements signed by the participating parties. Each program is presented separately, detailing its historical establishment, operational aspects, and statistics on pool characteristics and performance. Following this, we provide a comparative analysis of key aspects across the 4 programs. Each program has its unique context and specificities. Even though 3 of 4 collaborations started just before the COVID-19 pandemic, they have collectively facilitated >450 transplants. This underscores the importance of further developing these collaborations to share practices and experiences, and to facilitate more transplants, particularly for difficult-to-match recipients. Three of the 4 presented collaborations are either fully operated or led by European countries. This highlights the crucial role of ongoing international cooperation in the development of KPDs, in particular in Europe. By further promoting collaboration among countries, we can facilitate pan-European exchanges and improve access to live kidney transplants for patients in need.

National linkage of the Australia and New Zealand Living Kidney Donor Registry and the Australia and New Zealand Dialysis and Transplant Registry provides the first Australian estimates of kidney failure treated with kidney replacement therapy (KRT) after living kidney donation (2004–2024). Out of 5291 donors (56,962 person-years; median follow-up, 10.96 years), three donors underwent KRT (0.53 per 10,000 person-years). No events occurred within 10 years of donation. Australian clinicians can now counsel and guide potential donors using local data: risk of kidney failure requiring KRT is very low, but late events warrant lifelong follow-up.

Background: The prevalence and impact of early-stage chronic kidney disease (CKD) on pregnancy is poorly defined. We aimed to identify women with suspected early CKD pre-conception and assess the impact on maternofoetal outcomes.Methods: We linked statewide perinatal datasets to pathology, renal registry and administrative datasets between 2005-23. We included women ≥18 years with one or more maternal serum creatinine measure within 5 years pre-conception or <30 days post-conception and examined maternofetal outcomes.Results:From 96 721 pregnancies (56 587 women), we included 42 212 pregnancies (33 116 women). Of those included, 644 had proteinuria or diagnosed kidney disease [and an estimated glomerular filtration rate (eGFR) >90 mL/min/1.73 m2], 2838 with an eGFR 60-90 mL/min/1.73 m2, and 30 with an eGFR 15-60 mL/min/1.73 m2. Only 6% of women with an eGFR <90 mL/min/1.73 m2 had formal quantitative measurement of albuminuria or proteinuria pre-conception. On multivariable analysis, women with suspected early CKD had an increased risk of gestation hypertension [odds ratio (OR) 1.21; confidence interval (CI) 1.04, 1.41] preeclampsia (OR 1.26; CI 1.03, 1.52), low birth weight (OR 1.15; CI 1.02, 1.31) and preterm delivery (OR 1.27; CI 1.03, 1.56) compared with those with normal kidney function.Conclusion: We identified that 1 in 10 pregnancies had an eGFR <90 mL/min/1.73 m2, proteinuria or diagnosed kidney disease, warranting further research focussing on pre-conception kidney function assessments. While these women were at an increased risk of some maternofetal outcomes, the absolute risk remains small.

BackgroundAcute kidney injury is a common complication of cardiac surgery and may lead to kidney failure. In a large sample sourced from national registries, we estimated the risk of kidney failure up to nine years following cardiac surgery and the associations with acute kidney injury, comorbidities and preoperative estimated glomerular filtration rate.MethodsData were linked probabilistically between population-based registries to identify adults with kidney failure (commencement of long-term kidney replacement therapy) following cardiac surgery. Risk of kidney failure accounting for the competing risk of death was estimated from 30 days following surgery using Fine-Gray models. Surgeries from 2010 to 2018 were included (n = 90 605) with follow-up until the end of 2018.ResultsA total of 465 adults (0.51%) developed kidney failure during follow-up and the cumulative incidence at five years was 0.65% (95% CI 0.59, 0.73). The risk of kidney failure increased with decreasing estimated glomerular filtration rate. The rate of any acute kidney injury was 26.2% and all stages were associated with kidney failure. For Stage 3 acute kidney injury compared with none, the adjusted subdistribution hazard ratio of kidney failure exceeded 4.4 at all intervals following surgery.ConclusionAcute kidney injury presented an enduring risk of kidney failure following cardiac surgery, independent of baseline estimated glomerular filtration rate. People comorbid with diabetes also experienced a high adjusted risk of kidney failure. All patients could benefit from perioperative management optimized to prevent acute kidney injury and regular postoperative nephrology follow-up for more than a year to mitigate the burden of kidney disease on the health system.

Background: Peritoneal dialysis (PD)-related infections are associated with an increased risk of mortality and impaired quality of life. The evidence for education interventions that lower rates of PD infection and improve patient outcomes is uncertain, which limits PD uptake despite its many advantages. The Targeted Education ApproaCH to Improve Peritoneal Dialysis Outcomes (TEACH-PD) is a registry-based, multi-center, cluster-randomized, controlled trial evaluating whether a standardized PD training curriculum for nurses and patients reduces the risk of PD-related infections.Methods: The demographic and clinical characteristics of the TEACH-PD participants were compared with patients who commenced PD during the recruitment period (July 2019 to September 2023) in Australia and New Zealand (ANZ) drawn from the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry and who were not enrolled in TEACH-PD. The cluster and individual characteristics were compared between the trial and the registry population using descriptive statistics and standardized differences. The characteristics of centers and participants were also compared between the two contributing countries.Results: In total, 5,987 eligible patients commenced PD, with 1,462 subsequently enrolled from 42 eligible clusters into TEACH-PD. Overall, the demographic and clinical characteristics of TEACH-PD participants and ANZ patients not enrolled in TEACH-PD were similar. The participant characteristics differed between countries for ethnicity, body mass index, kidney function at dialysis commencement, and cause of kidney failure.Conclusions: TEACH-PD participants had similar demographic and clinical characteristics as non-trial patients commencing PD in ANZ. These results indicate that the findings from the TEACH-PD trial on completion may be broadly generalizable to dialysis care across ANZ.

Children of transplanted mothers are at increased risk of adverse birth outcomes, but childhood health outcomes are undefined. Using linked data from the Australia and New Zealand Dialysis and Transplant Registry, perinatal and hospital datasets, admissions were compared between children of transplanted mothers and mothers not exposed to kidney replacement therapy. From 2 067 661 babies, 137 children of transplanted mothers (137 birth admissions) were identified; 93 had 444 subsequent admissions, with a median follow-up of 2.3 years (interquartile range, 0.8-5.1). Subsequent admissions involved longer stays (>5 days: 7% versus 4%; P < .001) but similar admission frequencies (40% having 1 admission, 20% 2, 15% 3, 5% 4, and 20% ≥5; P = .31). Except for perinatal-originated conditions (3.7-fold higher admissions; 95% confidence interval, 2.1-6.5), other disease domains were similar between groups. Admission rates were comparable for preterm children, and children of mothers with hypertensive disorders of pregnancy, regardless of transplantation status. At birth, children of transplanted mothers required more ventilation (23% versus 5%, P < .001), medications (66% versus 31%, P < .001), and venous catheterization (19% versus 5%, P < .001). Medication use remained higher in subsequent admissions (19.7% versus 6.8%, P < .001). Hospital utilization data do not signal major additional health concerns beyond the perinatal period, providing reassuring evidence.

Glomerular diseases are rare with limited epidemiological and long-term outcome data. This study used linked health records to identify patients with glomerular disease and then track their long-term outcomes in Australia. Our findings show that glomerular disease affects about 89 in every 100,000 people, with 12 new cases per 100,000 people each year. Over an average period of 6 years, we found that those with glomerular disease had a 31 times higher risk of kidney failure and 2–4 times higher risk of death, heart disease, blood clots, and severe infections, compared to people without these conditions. These risks were similar whether the disease was newly diagnosed or had been present for some time. People with glomerular disease were hospitalised more often and for longer periods of time than those who did not have the condition. The poor outcomes of patients with glomerular diseases highlight the need for improved monitoring and treatment, with linked health data offering insights into the epidemiology and clinical outcomes of these rare kidney diseases.

Artificial intelligence (AI) promises significant advancements in nephrology. While current use of AI in clinical nephrology practice is limited, there is scope for application in transplant allocation, remote dialysis monitoring, and CKD management.Yet, despite its potential, the use of AI in nephrology raises important ethical issues. Challenges include concerns about trustworthiness and reliability of AI systems, accountability for inaccurate results, injustice from the perpetuation or exacerbation of individual and systemic biases and inequities, and risks to patient privacy arising from the need for AI to access to sensitive health data.In addition, there are unresolved questions about the application of current disclosure and informed consent practices for patients when AI is used in their care and about the environmental and sustainability effect of this energy-hungry technology in an already resource intensive specialty. This article explores these ethical challenges and gives recommendations for addressing them, both at an individual clinician and health care system level.

Purpose: Evidence suggests that patient navigators (PNs) can improve patient engagement, emotional wellbeing and clinical outcomes. This study explored how PNs influence the care experiences of Aboriginal and Torres Strait Islander peoples living with kidney failure, from the perspectives of patients and health service staff.Methods: Qualitative data were collected through kidney journey mapping and yarning interviews across four kidney health services employing PNs in the Northern Territory and South Australia. Data were thematically analysed to understand patient care experiences with and without PN support.Main findings: Patients reported challenges around inadequate communication, difficulty accessing appropriate services and support, poor cultural safety, and the emotional toll of treatment. Support included family and patient networks, positive relationships with health staff, and holistic models of care. PNs played a supportive role by sharing their kidney journey experiences, providing cultural connection, peer support and bridging systemic gaps.Principle conclusions: PNs strengthened patient care experiences by addressing service gaps, improving cultural support and sharing from lived experience. Embedding PNs into standard kidney care is a critical step toward achieving culturally safe, equitable and responsive health systems.