Improving Diverse and Equitable Involvement of Patients and Caregivers in Research in CKD: Report of a Better Evidence and Translation-Chronic Kidney Disease (BEAT-CKD) Workshop.

Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD.

Determining Plasma Tacrolimus Concentrations Using High-Performance LC-MS/MS in Renal Transplant Recipients.

BACKGROUND: Whole-blood therapeutic drug monitoring of tacrolimus is conducted to maintain tacrolimus concentrations within a safe and effective range. Changes in hematocrit cause variability in blood concentrations of tacrolimus because it is highly bound to erythrocytes. Measuring plasma concentrations may eliminate this variability; however, current methods have limitations owing to the use of cross-reactive immunoassays, plasma separation at nonbiological temperatures, and lack of clinical validation. This study aimed to develop and validate a clinically applicable method to measure plasma tacrolimus concentrations in renal transplant recipients and to examine the concentration differences between genotypic CYP3A5 expressors and nonexpressors. METHODS: Plasma tacrolimus concentrations were measured in 9 stable renal transplant recipients who were genotypic CYP3A5 expressors or nonexpressors. Tacrolimus was extracted from plasma using solid-phase extraction, and liquid chromatography-tandem mass spectrometry was used for detection and quantitation. RESULTS: This assay was sensitive, selective, and linear between 100 and 5000 ng/L, with intraassay and interassay imprecision and inaccuracy <10% and <5% respectively. The extraction recovery of tacrolimus and ascomycin was 74%. Matrix ion suppression effects were 31.5% and 35% with overall recovery of 50.6% and 48.3% for tacrolimus and ascomycin, respectively. Whole-blood concentrations accounted for approximately 46% of the variation in plasma concentrations in CYP3A5 expressors and nonexpressors. No difference in dose-adjusted whole-blood and plasma concentrations was observed between CYP3A5 expressors and nonexpressors. CONCLUSIONS: This assay is clinically applicable with excellent performance and demonstrated that tacrolimus plasma concentrations highly correlated with whole-blood concentrations.

Characteristics and Frequency of Physical Activity and Exercise-Related Side Effects in People Receiving Peritoneal Dialysis.

OBJECTIVE: People receiving peritoneal dialysis may receive health benefits from physical activity or exercise. However, on-going uncertainty and fear regarding safety may result in this population missing out on the health benefits of participation. The aim of this study was to explore the characteristics and frequency of physical activity and/or exercise-related side effects (e.g., symptoms such as pain or shortness of breath) and negative health events (e.g., stroke or hyper/hypoglycemia) experienced by people receiving peritoneal dialysis. METHODS: An international online survey involving adults receiving peritoneal dialysis was conducted with questions related to nature, occurrence, and impact of side effects and/or negative health events experienced during or soon after participation in physical activity or exercise. RESULTS: Fifty-two people completed the survey reporting 151 side effects that were related to physical activity and exercise and 67 that were possibly related. Fatigue (58% of respondents), muscle/joint soreness or pain (54%), and dizziness (43%) were the most frequently reported side-effect types. The majority occurred occasionally (58% of all side effects), if not rarely (24%) and participation in on-going physical activity or exercise was typically prevented only occasionally (39%) or not at all (31%). Side effects were mainly self-managed (54% of all side effects) or did not require treatment (19%) and had low (38%) or no effect (30%) on ability to do daily activities. CONCLUSIONS: People receiving peritoneal dialysis generally experience side effects that can be considered a normal response to physical activity or exercise engagement. Furthermore, the risk of serious or peritoneal dialysis-specific side effects as a result of physical activity or exercise appears to be low. The results add to the emerging evidence suggesting physical activity and exercise appear to be safe for people receiving peritoneal dialysis.

Management of potassium-wasting syndrome in the antepartum, intrapartum and postpartum period.

Potassium-wasting syndromes, including Gitelman or Bartter syndrome, require close medical and biochemical review during pregnancy to reduce potentially severe complications, morbidity and mortality. We report a case of severe potassium-wasting syndrome managed successfully in pregnancy with extremely high oral potassium intake.

Significant kidney disease in pregnancy: Feasibility and outcomes of a national population-based study using the Australasian Maternity Outcomes Surveillance System.

BACKGROUND: Current understanding of clinical practice and care for maternal kidney disease in pregnancy in Australia is hampered by limitations in available renal-specific datasets. AIMS: To capture the epidemiology, management, and outcomes of women with significant kidney disease in pregnancy and demonstrate feasibility of a national cohort study approach. MATERIALS AND METHODS: An Australian prospective study (2017-2018) using a new kidney disease-specific survey within the Australasian Maternity Outcomes Surveillance System (AMOSS). Women who gave birth with acute kidney injury (AKI), advanced chronic kidney disease (CKD), dialysis dependence or a kidney transplant were included. Demographic data, renal and obstetric management, and perinatal outcomes were collected. RESULTS: Among 58 case notifications from 12 hospitals in five states, we included 23 cases with kidney transplant (n = 12), pre-existing CKD (n = 8), newly diagnosed CKD (n = 2) and dialysis (n = 1). No cases of AKI were reported. Reporting rates were better in states with study investigators and, overall, cases were likely under-reported. Nearly 35% of women had a non-delivery-related antenatal admission. Nephrology involvement was 78.3% during pregnancy and 91% post-partum. Adverse events were increased, including pre-eclampsia (21.7%), and preterm birth (60.9%). Women had high rates of aspirin (82.6%) and antihypertensive (73.9%) use, indwelling catheter for labour/delivery (65.2%), caesarean delivery (60.9%), and blood transfusion (21.7%). CONCLUSIONS: This first-ever Australian prospective study of significant kidney diseases in pregnancy provided novel insights into renal-specific clinical patterns and practices. However, under-reporting was likely. Future studies need to overcome the challenges of case identification and data collection burden.

Glomerular diseases in pregnancy: pragmatic recommendations for clinical management.

Our understanding of the various aspects of pregnancy in women with kidney diseases has significantly improved in the last decades. Nevertheless, little is known about specific kidney diseases. Glomerular diseases are not only a frequent cause of chronic kidney disease in young women, but combine many challenges in pregnancy: immunologic diseases, hypertension, proteinuria, and kidney tissue damage. An international working group undertook the review of available current literature and elicited expert opinions on glomerular diseases in pregnancy with the aim to provide pragmatic information for nephrologists according to the present state-of-the-art knowledge. This work also highlights areas of clinical uncertainty and emphasizes the need for further collaborative studies to improve maternal and fetal health.

Demystifying the connection between periodontal disease and chronic kidney disease - An umbrella review.

Chronic kidney disease (CKD) and poor oral health are inter-related and their significant impact on each other is well established in the literature. Many systematic reviews and meta-analyses have demonstrated a strong relationship between CKD and periodontitis, where periodontal treatment has shown potential in improving CKD outcomes. However, the quality of the studies and heterogeneity of the results show variation. The aim of this umbrella review was to review the quality of the current systematic reviews on the relationship between CKD and oral health with an emphasis on periodontal disease and to generate clinically relevant guidelines to maintain periodontal health in patients with CKD. This umbrella review was conducted and reported in alignment with the Joanna Briggs Institute and the PRISMA 2020 guidelines. The review protocol was established prior to commencing the review and registered on JBI and PROSPERO (CRD42022335209). Search strings were established for PubMed, Embase, Web of Science, Cochrane Database of Systematic Reviews, and Dentistry & Oral Science Source up to April 2022. All systematic reviews and meta-analyses that considered the relationship between CKD and periodontitis or periodontal treatment were included. Of 371 studies identified through the systematic search, 18 systematic reviews met the inclusion criteria. Ten studies assessed the relationship between oral health status and CKD with a focus on periodontitis and CKD, five reviewed the impact of periodontal treatment on CKD outcomes, two included both relationship and effectiveness of periodontal treatment and one qualitatively reviewed oral health-related quality of life in patients with kidney failure. Findings indicate there is a bidirectional relationship between CKD and periodontal disease. In view of the heterogeneity of the existing literature on CKD and periodontal disease, specific recommendations for the management of periodontitis among patients with CKD are proposed for medical professionals, dental professionals, and aged care workers based on the evidence collated in this review.

Baseline characteristics of participants in the NAVKIDS2 trial: a patient navigator program in children with chronic kidney disease.

BACKGROUND: Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. METHODS: The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0-16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. RESULTS: The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1-5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. CONCLUSION: The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. A higher resolution version of the Graphical abstract is available as Supplementary information.

Feasibility of Symptom monitoring WIth Feedback Trial (SWIFT) for adults on hemodialysis: a registry-based cluster randomized pilot trial.

BACKGROUND: Patients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants' treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care. METHODS: This is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described. RESULTS: There were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months. CONCLUSIONS: Electronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway. TRIAL REGISTRATION: ACTRN12618001976279 (07/12/2018).

How Can Nurses Support Patients on Hemodialysis Who Experience Needle Fear? An Online Educational Intervention for Nephrology Nurses.

Nephrology nurses struggle to support patients on hemodialysis who experience needle fear due to absence of adequate programs or guidelines. Therefore, we have designed an educational intervention for nurses to learn techniques and strategies to support patients with needle fear and review best cannulation practices with minimal trauma to improve patients' experience of dialysis. A pre-post design measured self-reported confidence in nurses' ability to support patients on dialysis who have a fear of needles. We found nurses can benefit from targeted educational interventions that provide information and strategies regarding needle fear management. Findings from this study have a potential to be transferred to other chronic disease settings with frequent needle use.

Pregnancy outcomes after kidney transplantation: the challenges of success.

Pregnancy after kidney transplantation is highly successful, though not without risk. A new national Dutch study of a large series of pregnancies in transplanted women highlights the complexities of pregnancy in this cohort and notes a move toward pregnancies in women with "less-than-perfect" graft function. We discuss these new data defining pregnancy outcomes and the ethical and clinical challenges that may arise in these mothers.

Perspectives of Patients, Nurses, and Nephrologists About Electronic Symptom Monitoring With Feedback in Hemodialysis Care.

RATIONALE & OBJECTIVE: Patients receiving hemodialysis experience high symptom burden and low quality of life (QOL). Electronic patient-reported outcome measures (e-PROMs) monitoring with feedback to clinicians may be an acceptable intervention to improve health-related QOL for patients receiving hemodialysis. This study explored patient and clinician perspectives on e-PROMs monitoring with feedback to clinicians. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 41 participants (12 patients, 13 nephrologists, 16 dialysis nurses) who participated in a 6-month feasibility pilot study of adults receiving facility-based hemodialysis across 4 Australian units. The intervention consisted of electronic symptom monitoring with feedback to clinicians, who also received evidence-based symptom management recommendations to improve health-related QOL. ANALYTICAL APPROACH: Semistructured interviews and focus group discussions explored the feasibility and acceptability of e-PROMs monitoring with feedback to clinicians. We conducted a thematic analysis of transcripts. RESULTS: We identified 4 themes: enabling efficient, systematic, and multidisciplinary patient-centered care; experiencing limited data and options for symptom management; requiring familiarity with technology and processes; and identifying barriers and competing priorities. While insufficient patient engagement, logistic/technical challenges, and delayed symptom feedback emerged as barriers to implementation, active engagement by nurses in encouraging and supporting patients during survey completion and clinicians' prompt action after symptom feedback were considered to be facilitators to implementation. LIMITATIONS: Limited generalizability due to inclusion of English-speaking participants only. CONCLUSIONS: Patients, nurses, and nephrologists considered e-PROMs monitoring with feedback to clinicians feasible for symptom management in hemodialysis. Clinician engagement, patient support, reliable technology, timely symptom feedback, and interventions to address symptom burden are likely to improve its implementation within research and clinical settings.

Factors influencing fertility rates in Australian women receiving kidney replacement therapy: analysis of linked Australia and New Zealand Dialysis and Transplant Registry and perinatal data over 22 years.

BACKGROUND: Pregnancy in women receiving kidney replacement therapy (KRT) is uncommon, and trends and factors influencing fertility rates remain poorly defined. METHODS: The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) was linked to mandatory perinatal data sets (all births from 1991 to 2013, ≥20 weeks' gestation) in four Australian jurisdictions. Overall, age- and era-specific fertility rates were calculated based on general and KRT population denominators. RESULTS: From 2 948 084 births, 248 babies were born to 168 mothers receiving KRT (37 babies born to 31 dialysed mothers; 211 babies born to 137 transplanted mothers). Substantial agreement between ANZDATA and perinatal data sets was observed for birth events and outcomes. Transplanted women had higher fertility rates than dialysed women in all analyses, with 21.4 live births/1000 women/year [95% confidence interval (CI) 18.6-24.6] in transplanted women, 5.8 (95% CI 4.1-8.1) in dialysed women and 61.9 (95% CI 61.8-62.0) in the non-KRT cohort. Fertility rates for dialysed women rose in recent years. After adjusting for maternal age and treatment modality, Caucasian women had higher fertility rates, while women with pre-existing diabetes, or transplanted women with exposure to KRT for ≤3.0 years had lower rates. As expected, transplanted women with a pre-conception estimated glomerular filtration rate (eGFR) of <45 mL/min/1.73 m2 or transplant-to-pregnancy interval of <1.0 year had lower fertility rates. Geographical location, socioeconomic status and primary disease (glomerulonephritis versus other) did not affect fertility rates. CONCLUSIONS: Reporting of births to ANZDATA is sufficiently accurate to justify ongoing data collection. Rising fertility rates in dialysed women may indicate permissive attitudes towards pregnancy. Treatment modality, ethnicity, diabetes, pre-conception eGFR, transplant-to-pregnancy interval and duration of KRT exposure were associated with fertility rates. These factors should be considered when counselling women with kidney disease about parenthood.

Pallid Disc Oedema in a Young Patient: Clinical and Diagnostic Challenge.

A mid-thirties male with end-stage renal failure receiving haemodialysis on a background of four failed renal transplants, post-transplant lymphoproliferative disorder,and autonomic dysfunction presented with acute vision change in his left eye. Over days his vision in that eye deteriorated from 20/25 to no light perception. Given his complex medical background he was extensively investigated for infective, inflammatory, infiltrative and vasculitic aetiologies to explain acute vision loss with pallid disc swelling. A final diagnosis of non-arteritic anterior ischaemic optic neuropathy secondary to refractive hypotension and haemodialysis was reached.

Pregnancy outcomes for simultaneous Pancreas-Kidney transplant recipients versus kidney transplant recipients.

Data about pregnancy outcomes for simultaneous pancreas-kidney transplant recipients (SPKR) are limited. We compared pregnancy outcomes in SPKR to Kidney Transplant Recipients (KTR) from 2001-17 using the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry and the Australian and New Zealand Pancreas Islet Transplant Registry (ANZPITR). A total of 19 pregnancies to 15 SPKR mothers, and 348 pregnancies to 235 KTR mothers were reported. Maternal ages were similar (SPKR 33.9 ± 3.9 years; KTR 32.1 ± 4.8 years, p = .10); however, SPKR had a shorter transplant to first-pregnancy interval compared to KTR (SPKR 3.3 years, IQR (1.7, 4.1); KTR 5 years, IQR (2.6, 8.7), p = .02). Median difference in creatinine pre- and post-pregnancy was similar between the groups (KTR -3 µmol/L, IQR (-15, 6), SPKR -3 µmol/L, IQR (-11, 3), p = .86). Maternal, fetal and kidney transplant outcomes were similar despite higher rates of pre-existing peripheral vascular and coronary artery diseases in SPKR. Live birth rates (>20 weeks) were comparable (SPKR 93.8% vs. KTR 96.8%, p = .06). KTR with either type 1 or type 2 diabetes mellitus (24 births) had similar outcomes compared to SPKR. In this national cohort, pregnancy outcomes were similar between SPKR and KTR mothers; however, findings should be interpreted with caution due to small sample sizes.

Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops.

BACKGROUND: There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. METHODS: We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically. RESULTS: Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. CONCLUSIONS: Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.

Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals.

BACKGROUND: Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational. METHODS: We conducted three workshops involving 105 patients/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease. RESULTS: We identified four themes. 'Navigating the unknown'-patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. 'Wary of added burden'-patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. 'Disillusioned and disconnected'-some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed 'Building motivation and interest'. CONCLUSIONS: Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.

'Knowledge is power': A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology.

Involving consumers (patients, carers and family members) across all stages of research is gaining momentum in the nephrology community. Scientific meetings present a partnership opportunity with consumers for dissemination of research findings. The Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) research collaboration, in partnership with Kidney Health Australia, convened two consumer sessions at the 54th Australian and New Zealand Society of Nephrology Annual Scientific Meeting held in September 2018. The educational objectives, topics and session formats were informed by members of the Better Evidence and Translation-Chronic Kidney Disease Consumer Advisory Board (which at the time comprised 36 consumers from around Australia with varied experience of kidney disease). Patients, health professionals and researchers facilitated and presented at the sessions. In-person and live-streaming attendance options were available, with over 400 total participants across the two sessions. Sessions were also video recorded for dissemination and later viewing. Evaluations demonstrated consumers found the presentations informative, relevant and accessible. Attendees indicated strong interest in participating in similar sessions at future scientific meetings. We propose a framework for partnering with consumers as organisers, facilitators, speakers and attendees at scientific meetings in nephrology.

Protocol and establishment of a Queensland renal biopsy registry in Australia.

BACKGROUND: Renal biopsy is often required to obtain information for diagnosis, management and prognosis of kidney disease that can be broadly classified into acute kidney injury (AKI) and chronic kidney disease (CKD). The most common conditions identified on renal biopsy are glomerulonephritis and tubulo-interstitial disorders. There is a paucity of information on management strategies and therapeutic outcomes in AKI and CKD patients. A renal biopsy registry will provide information on biopsy-proven kidney disorders to improve disease understanding and tracking, healthcare planning, patient care and outcomes. METHODS: A registry of patients, that includes biopsy-proven kidney disease, was established through the collaboration of nephrologists from Queensland Hospital and Health Services and pathologists from Pathology Queensland services. The registry is in keeping with directions of the Advancing Kidney Care 2026 Collaborative, established in September 2018 as a Queensland Health initiative. Phase 1 of the registry entailed retrospective acquisition of data from all adult native kidney biopsies performed in Queensland, Australia, from 2002 to 2018. Data were also linked with the existing CKD.QLD patient registry. From 2019 onwards, phase 2 of the registry involves prospective collection of all incident consenting patients referred to Queensland public hospitals and having a renal biopsy. Annual reports on patient outcomes will be generated and disseminated. DISCUSSION: Establishment of the Queensland Renal Biopsy Registry (QRBR) aims to provide a profile of patients with biopsy-proven kidney disease that will lead to better understanding of clinico-pathological association and facilitate future research. It is expected to improve patient care and outcomes.

The Spectrum of Adverse Pregnancy Outcomes Based on Kidney Disease Diagnoses: A 20-Year Population Study.

BACKGROUND AND OBJECTIVES: Kidney disorders in pregnancy may be under-recognized and have variable impact on outcomes depending on diagnosis. Population-level data are limited, particularly for Australia, and comparison of impact of different kidney disorders on pregnancy has rarely been assessed. This study examined the prevalence and outcomes of varied kidney disorders using population-level perinatal data from a large cohort. METHODS: Women with singleton pregnancies > 20 weeks' gestation from the South Australian Pregnancy Outcomes Unit (1990-2012). Women with a kidney disorders diagnostic code were grouped into categories (immunological, cystic/genetic, urological, vesicoureteral reflux (VUR), pyelonephritis and "other"). Key pregnancy outcomes were assessed, with adjustment for demographic variables. RESULTS: Kidney disorders were reported in 1,392 (0.3%) of 407,580 births. These pregnancies had increased risk of pregnancy-induced hypertension (OR 2.16, 95% CI 1.82-2.56), induction of labor (RRR vs. spontaneous birth 2.10, 95% CI 1.87-2.36), all Caesarean section (OR 1.31, 95% CI 1.17-1.47) as well as Caesarean section without labor (RRR 1.82, 95% CI 1.57-2.10), preterm birth (< 37 weeks; 2.76, 95% CI 2.40-3.18), low birth weight (< 2,500 g) infants (OR 2.43, 95% CI 2.07-2.84), and neonatal intensive care admission (OR 2.64, 95% CI 2.12-3.29). Diagnostic subgroups demonstrated differing patterns of adverse outcomes, enabling the development of a matrix of risk. Women with immunological renal conditions and VUR had greatest risk overall, and only women with immunological diseases had increased risk of small-for-gestational age < 10th centile (OR 2.36, 95% CI 1.26-4.42). Women with nonchronic urological conditions and pyelonephritis had increased risk of preterm birth, but not other adverse events. VUR conferred particularly increased risk of Caesarean section and induced labor. CONCLUSIONS: In a cohort of > 1,300 women with varied kidney disorders, increased adverse obstetric and perinatal events were observed, and the nature and magnitude of risk differed according to diagnosis. In particular, vesicoureteric reflux is not a benign condition in pregnancy. Women with nonchronic conditions still had increased risk of preterm birth. We confirm that women with kidney disorders warrant vigilant and tailored prepregnancy care and clinical care in pregnancy.