The survival benefit of deceased donor kidney transplantation for Aboriginal and Torres Strait Islander people, 2006-20: a retrospective national cohort study.

OBJECTIVES: To quantify the survival benefit of kidney transplantation for Aboriginal and Torres Strait Islander people waitlisted for deceased donor kidney transplantation in Australia. STUDY DESIGN: Retrospective cohort study; analysis of linked data from the Australia and New Zealand Dialysis and Transplant (ANZDATA) registry, the Australia and New Zealand Organ Donation (ANZOD) registry, and OrganMatch (Australian Red Cross). SETTING, PARTICIPANTS: All adult Aboriginal and Torres Strait Islander people (18 years or older) who commenced dialysis in Australia during 1 July 2006 - 31 December 2020 and were included in the kidney-only deceased donor transplant waiting list. MAIN OUTCOME MEASURES: Survival benefit of deceased donor kidney transplantation relative to remaining on dialysis. RESULTS: Of the 4082 Aboriginal and Torres Strait Islander people who commenced dialysis, 450 were waitlisted for kidney transplants (11%), of whom 323 received deceased donor transplants. Transplantation was associated with a significant survival benefit compared with remaining on dialysis after the first 12 months (adjusted hazard ratio [HR], 0.38; 95% confidence interval [CI], 0.20-0.73). This benefit was similar to that for waitlisted non-Indigenous people who received deceased donor kidney transplants (adjusted HR, 0.47; 95% CI, 0.40-0.57; Indigenous status interaction: P = 0.22). CONCLUSIONS: From twelve months post-transplantation, deceased donor transplantation provides a survival benefit for Aboriginal and Torres Strait Islander people. Our findings provide evidence that supports efforts to promote the waitlisting of Aboriginal and Torres Strait Islander people who are otherwise eligible for transplantation.

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, however, 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 CKD and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians and researchers 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 andsupport 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.

Recommendations for culturally safe clinical kidney care for First Nations Australians: a guideline summary.

INTRODUCTION: First Nations Australians display remarkable strength and resilience despite the intergenerational impacts of ongoing colonisation. The continuing disadvantage is evident in the higher incidence, prevalence, morbidity and mortality of chronic kidney disease (CKD) among First Nations Australians. Nationwide community consultation (Kidney Health Australia, Yarning Kidneys, and Lowitja Institute, Catching Some Air) identified priority issues for guideline development. These guidelines uniquely prioritised the knowledge of the community, alongside relevant evidence using an adapted GRADE Evidence to Decision framework to develop specific recommendations for the management of CKD among First Nations Australians. MAIN RECOMMENDATIONS: These guidelines explicitly state that health systems have to measure, monitor and evaluate institutional racism and link it to cultural safety training, as well as increase community and family involvement in clinical care and equitable transport and accommodation. The guidelines recommend earlier CKD screening criteria (age ≥ 18 years) and referral to specialists services with earlier criteria of kidney function (eg, estimated glomerular filtration rate [eGFR], ≤ 45 mL/min/1.73 m2 , and a sustained decrease in eGFR, > 10 mL/min/1.73 m2 per year) compared with the general population. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINES: Our recommendations prioritise health care service delivery changes to address institutional racism and ensure meaningful cultural safety training. Earlier detection of CKD and referral to nephrologists for First Nations Australians has been recommended to ensure timely implementation to preserve kidney function given the excess burden of disease. Finally, the importance of community with the recognition of involvement in all aspects and stages of treatment together with increased access to care on Country, particularly in rural and remote locations, including dialysis services.

Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.

OBJECTIVE: To describe the experiences, perceptions and suggested improvements in healthcare identified by Aboriginal patients, families and community members living with kidney disease in South Australia. METHODS: Community consultations were held in an urban, rural and remote location in 2019 by the Aboriginal Kidney Care Together - Improving Outcomes Now (AKction) project and Kidney Health Australia. Consultations were co-designed with community members, using participatory action research, Yarning, Dadirri and Ganma Indigenous Methodologies. Key themes were synthesised, verified by community members and shared through formal and community reports and media. RESULTS: Aboriginal participants identified the importance of: family and community and maintaining their wellbeing, strength and resilience; the need for prevention and early detection that is localised, engages whole families and prevents diagnosis shock; better access to quality care that ensures Aboriginal people can make informed choices and decisions about their options for dialysis and transplantation, and; more Aboriginal health professionals and peer navigators, and increased responsiveness and provision of cultural safety care by all kidney health professionals. CONCLUSION: Aboriginal community members have strong and clear recommendations for improving the quality and responsiveness of health care generally, and kidney care specifically. IMPLICATIONS FOR PUBLIC HEALTH: Aboriginal people with lived experience of chronic conditions wish to significantly inform the way care is organised and delivered.

Real Ways of Working Together: co-creating meaningful Aboriginal community consultations to advance kidney care.

OBJECTIVE: To describe a process of meaningful Aboriginal community engagement that repositioned and valued community members' knowledge(s) and lived experiences while strengthening relationships, research processes and outcomes. BACKGROUND: Aboriginal Australians have the oldest continuous culture in the world, yet due to effects of colonisation, experience some of the world's poorest health outcomes. The AKction [Aboriginal Kidney Care Together - Improving Outcomes Now] project brought together Aboriginal people with lived experience of kidney disease, clinicians and researchers to improve kidney care. METHODOLOGY: Using Aboriginal methodologies of Ganma and Dadirri within community-based participatory action research (cb-PAR), a core advisory group of Aboriginal people with lived experiences of kidney disease worked closely with clinicians and researchers. RESULTS: Three community consultation workshops that deeply valued Aboriginal knowledge(s) were co-created. Community members formed a reference group, established partnerships and influenced health research, policy and service provision. Non-Indigenous researchers engaged in critical self-reflection and levelling of Western-Aboriginal and clinician-consumer power imbalances. CONCLUSIONS: Deeply respectful community engagement is possible through co-creation and cb-PAR. It results in multiple positive impacts and beneficial relationships between community members, clinicians and academics. IMPLICATIONS FOR PUBLIC HEALTH: Meaningful consultation with Aboriginal communities guides culturally safe research processes, health policy and service delivery.

Successful Subsequent Pregnancy in a Woman Receiving Eculizumab for Pregnancy-Associated Atypical Haemolytic Uraemic Syndrome.

Atypical haemolytic uraemic syndrome (aHUS) is a form of thrombotic microangiopathy precipitated by unopposed complement activation, the treatment of which has been revolutionised by the availability of the monoclonal anti-complement (C5) antibody, eculizumab. Historically, women with aHUS would be unable to achieve a successful pregnancy due to the severity of their renal disease and for the few who could conceive, recurrence of aHUS was a significant risk. In spite of this, parenthood remains a priority for many. Experience with eculizumab use in the management of aHUS during pregnancy is growing and with it comes a significant change in the course of the disease. We present the case of a 28-year-old woman diagnosed with severe aHUS in the first trimester of her first pregnancy. She received rescue therapy with eculizumab and had a return to normal renal function. While this pregnancy was lost, she strongly desired a family. We managed her through a subsequent pregnancy while receiving eculizumab. This pregnancy was uncomplicated and carried to term and she birthed a healthy 2500 g baby girl. The complexities of managing a pregnancy in a woman with a history of aHUS are vast but not insurmountable, as demonstrated by this case.

Audit of emergency department assessment and management of patients presenting with community-acquired needle stick injuries.

OBJECTIVES: To describe characteristics and management of people with community acquired needle stick injuries (CANSI) attending urban emergency departments; and suggest a guideline to improve assessment, management, and documentation. METHODS: A retrospective analysis of cases with CANSI attending emergency departments in two tertiary hospitals between 2001 and 2005 using medical record review with follow up phone and written survey. RESULTS: Thirty-nine cases met the criteria for CANSI. Persons younger than 30 years sustained 48.72% of all injuries. Source serology was available for only five cases (12.82%). Thirty-one of thirty-nine patients (79.49%) were classed as not immune to hepatitis B but only four of these (12.90%) received both hepatitis B vaccination and hepatitis B immunoglobulin. Six patients (15.38%) received HIV prophylaxis; of which two (33.33%) did not receive baseline HIV testing. Of ten patients referred to immunology clinic for follow up only two (20.00%) attended at 6 months. CONCLUSION: We have identified groups that are at high risk of CANSI, including young males, security workers and cleaners. In the majority of cases protection against hepatitis B was inadequately provided, and a substantial proportion had inadequate baseline assessment and documentation. A guideline is suggested that may be used to improve these deficits.