Publications

AbstractBackground: Routine implementation of chronic kidney disease research into practice and policy is delayed, fragmented and inconsistent. This workshop aimed to identify strategies to strengthen the implementation of research findings into practice and policy from the perspectives of patients, their caregivers and health professionals.Methods: A workshop was conducted with patients (n=18), caregivers (n=9) and health professionals (n=102) from Australia and New Zealand. Thirteen simultaneous breakout groups of 6-10 participants were held online and in-person to discuss strategies for implementing research findings into practice and policy in chronic kidney disease. Transcripts were thematically analyzed.Results: Three interrelated strategies were identified. Co-production for credibility emphasizes genuine involvement of patients and caregivers in governance and priority-setting to enhance the legitimacy of research, foster trust and build lasting partnerships to extend beyond a single project. Diversity and equity for broader transferability encompasses culturally tailored, community-grounded involvement with underrepresented groups, resourced with dedicated time and funds for outreach and translation to ensure cultural relevance and generalizability. Accessible and actionable integration of evidence focuses on clearly articulating research outputs into clinical and policy implications by packaging findings in practical and accessible formats (e.g., plain-language summaries and visual materials), to translate evidence into action.Conclusions: Embedding these strategies may strengthen the routine translation of research evidence into practice and policy, ultimately improving care and outcomes for individuals with kidney disease.

AbstractBackground: Needle fear is an under-recognised burden among haemodialysis recipients which can influence treatment choice and therapy engagement.Objective: This study aimed to develop and validate a tool to identify needle fear in pre-dialysis or dialysis cohorts.Methods: The Measuring Needle Fear (MNF) tool was developed using deductive and inductive methods, with items grouped into four domains to ensure comprehensive symptom coverage. Content validity was assessed using the Content Validity Index (CVI), and reliability using Gwet's AC1 coefficient and Cronbach's alpha. Exploratory factor analysis (EFA) was performed using Principal Axis Factoring with oblimin rotation, supported by the Kaiser-Meyer-Olkin statistic and Bartlett's test. Discriminative ability and the optimal cut-off point were evaluated using ROC analysis.Results: A total of 120 participants completed the questionnaire. Test-retest reliability was excellent for most MNF items (30 items; AC1 = 0.81-1.00) and good for the remainder (nine items; AC1 = 0.61-0.80). EFA identified three factors - Fear, Avoidance and Embarrassment - with excellent sampling adequacy (KMO = 0.908) and a significant Bartlett's test (p < 0.001). Internal consistency was high (Cronbach's alpha = 0.895). ROC analysis demonstrated excellent discrimination (AUC = 0.959), with a score ⩾5 identifying 31% of patients as likely to experience needle fear.Conclusion: The Measuring Needle Fear tool is a validated, reliable method for identifying needle fear in pre-dialysis and dialysis patients, supporting early detection and enabling timely, targeted support.

AbstractBackground and hypothesis: Patients receiving chronic dialysis have increased risks of postoperative mortality and morbidity. Studies have suggested that patients receving hemodiafiltration (HDF) compared to hemodialysis (HD) may benefit from improved cardiovascular health, reduced infections and better overall survival. This study aimed to determine if patients receving HDF had improved postoperative outcomes after elective surgery compared to patients receiving HD.Methods: Bi-national population cohort study evaluated all incident and prevalent patients receiving chronic hemodialysis in Australia and New Zealand. Surgeries included upper gastrointestinal, anorectal, hernia surgery, cholecystectomy and appendectomy. The primary outcome was 30-day all-cause mortality. Secondary outcomes included cardiovascular and infective outcomes. As there was potential for data to be correlated with multiple surgeries clustered at the patient and centre level, a multi-level mixed effects logistic regression model was used, with patient level covariates as fixed effects and dialysis centre as random intercepts, whereby patients were nested within centres.Results: During the study period, there were 1750 surgeries in 1669 patients, of which 416 (23.8%) were receiving HDF. The median age was similar in both groups, as was the prevalence of comorbidities. Patients receiving HDF had received dialysis for a shorter period (0.9 vs. 2.3 years, p < 0.001). The 30-day mortality rate was lower in patients receiving HDF than in those receiving HD (1.9 vs. 3.3%, p < 0.005). Using multi-level mixed effects logistic regression, HDF was not associated with reduced mortality odds (OR 0.84, 95% CI 0.37-1.93) compared to patients receiving HD. Patients on HDF experienced a lower rate of a composite of infections (5.5 vs. 9.8%, p = 0.012), and required less blood transfusions (7.7 vs. 12.4%, p = 0.009). The occurrence of cardiovascular complications was not significantly different between the two groups (1.4 vs. 2.3%, p = 0.280).Conclusions: The use of HDF was not associated with lower postoperative mortality odds but lower rates of infective complications compared to HD were observed.

AbstractIntroduction: While calcineurin inhibitors (CNI) reduce proteinuria in a subgroup of children with genetic podocytopathies, previous reports suggest that the response is short-lived and of no benefit to long-term outcomes. Here, we assess CNI response sustainability and the association between different patterns of response preservation and kidney survival.Methods: We performed a retrospective cohort study of patients aged 0-18 years with genetic podocytopathies treated with CNI for at least three months from 34 pediatric nephrology centers worldwide. Response status was defined in accordance with International Pediatric Nephrology Association Clinical Practice Recommendations.Results: We analyzed 136 patients with genetic podocytopathies over a median follow-up period of 42.1 months (between CNI initiation and last follow-up or commencement of kidney replacement therapy, whichever occurred first). At least partial response was attained in 28% and 22% of patients at six months post-CNI initiation and last follow-up, respectively. Compared to non-response group, patients with at least partial response at six months had significantly lower urine protein-to-creatinine ratios across various timepoints post-CNI. 71%, 11% and 18% exhibited no response, non-sustained and sustained response, respectively, throughout the observation period. Both sustained and non-sustained responses were significantly associated with superior kidney survival compared to no response. Importantly, no patients with sustained response developed kidney failure over a follow-up period of 42 (inter quartile range 19-62) months. Patients with non-sustained response had a 92% lower risk of kidney failure, compared to non-responders.Conclusion: A subset of children with genetic podocytopathies experienced a sustained response to CNI, and none developed kidney failure. Children with non-sustained response still demonstrated superior kidney survival compared to non-responders. Our findings may support a trial of CNI in genetic podocytopathies, and continuing therapy among those showing clinical response.

AbstractBackground: Research impacts are typically measured by academic indicators and standards. These indicators often do not capture translational or purposeful benefits to society, in particular patients and caregivers. In this workshop, we aimed to identify impacts of research that are important to people with chronic kidney disease, caregivers and health professionals.Methods: We held a national workshop with ten breakout groups involving patients, caregivers and health professionals from Australia and New Zealand, to discuss the importance of research impact. The transcripts were thematically analyzed.Results: In total, 81 participants including patients, caregivers (n=27) and health professionals (n=54). We identified seven themes with research impact: preventing kidney disease and kidney failure; enhancing life participation and wellbeing (reducing symptoms and complications, prioritizing mental health, minimizing the burden of treatment); fostering societal understanding; improving access to care (reducing geographical barriers, and promoting advocacy for financial support); strengthening agency in decision making; achieving treatment breakthroughs including finding a cure, and making innovative advancements in dialysis technology; and offering hope for future generations.Conclusion: The impacts of research most important to patients and caregivers are those with a tangible and immediate influences on day-to-day life enabling an improved quality of life by addressing challenges, burden and hope for treatment advancements. We suggest that researchers and health professionals ensure all future research is grounded in a person-centered approach to enable impactful research.

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.