Engagement and partnership with consumers and communities in the co-design and conduct of Research: Lessons from the INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on haemodialysis (INFERR) clinical trial.

BACKGROUND: Engagement and partnership with consumers and communities throughout research processes produces high quality research meeting community needs and promoting translation of research into improved policy and practice. Partnership is critical in research involving Aboriginal and/or Torres Strait Islander people (First Nations Peoples) to ensure cultural safety. We present lessons from the design, implementation and progress of the National Health and Medical Research Council funded INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on hemodialysis (INFERR) clinical trial. MAIN BODY: The trial was designed to understand the benefits and harms of iron therapy in First Nations Australians on haemodialysis with anaemia and hyperferritinaemia. The lack of evidence for treatment was discussed with patients who were potential participants. A key element ensuring safe conduct of the INFERR trial was the establishment of the Indigenous Reference Groups (IRGs) comprising of dialysis patients based in the Top End of Australia and Central Australia. Two IRGs were needed based on advice from First Nations communities and researchers/academics on the project regarding local cultural differences and approaches to trial conduct. The IRGs underpin culturally safe trial conduct by providing input into study materials and translating study findings into effective messages and policies for First Nations dialysis patients. Throughout the trial conduct, the IRGs' role has developed to provide key mechanisms for advice and guidance regarding research conduct both in this study and more broadly. Support provided to the IRGs by trial First Nations Research Officers and independent First Nations researchers/academics who simplify research concepts is critical. The IRGs have developed feedback documents and processes to participants, stakeholders, and the renal units. They guarantee culturally safe advice for embedding findings from the trial into clinical practice guidelines ensuring evidence-based approaches in managing anaemia in haemodialysis patients with hyperferritinaemia. CONCLUSION: Active consumer and community partnership is critical in research conduct to ensure research impact. Strong partnership with consumers in the INFERR clinical trial has demonstrated that First Nations Consumers will engage in research they understand, that addresses health priorities for them and where they feel respected, listened to, and empowered to achieve change.

In this paper, we present the importance of actively involving consumers in the planning, implementation and conduct of research using the example of a clinical trial among Aboriginal and/or Torres Strait Australians (First Nations Australians) who have kidney disease and are currently receiving haemodialysis. The study assesses how safe and effective it is for people on dialysis to receive iron given through the vein during dialysis when they have anaemia and high levels of a blood test called ferritin, a test used routinely to measure iron levels. Two consumer reference groups of First Nations patients on dialysis, one based in the Top End of Australia and the other based in Central Australia, are supported by First Nations Research Officers and Research Academics to make sure that the research is performed in a way that involves, respects and values First Nations participation, culture, and knowledge. Active consumer and community partnership in this study has supported robust research governance processes which we believe are crucial for knowledge translation to have a positive impact for patients.

Examining barriers to timely waitlisting for kidney transplantation for Indigenous Australians in Central Australia.

BACKGROUND: Indigenous Australians are disproportionately affected by end stage kidney disease. Despite this, they face significant delays being assessed and waitlisted for kidney transplant. AIMS: To examine the kidney transplant waitlisting process in our region, to compare the workup process between Indigenous Australians and non-Indigenous patients, and identify major sources of delay. METHODS: We analysed the records of all patients being treated by our service who were on the kidney transplant waitlist between January 2017 and June 2018. Between-group differences were used to compare the time between commencement of dialysis and completion of each component of assessment. Patients who had more than 1 year between commencement of dialysis and waitlisting were further analysed for major sources of delay. RESULTS: Twenty-five patients were included (20 Indigenous Australians and 5 non-Indigenous). The median time to waitlisting for transplant after commencing dialysis was significantly longer in the Indigenous group (1215 vs 264 days, P = 0.032). Indigenous Australian patients waited longer before commencing the transplant assessment process and before completing dental assessment, tissue typing and review by the transplant nephrologist and surgeon. Five patients (two Indigenous Australians, three non-Indigenous) were waitlisted within 1 year of commencing dialysis. Among the remaining 20 patients, cardiac and systems issues were the two most common major sources of delay. CONCLUSION: Indigenous Australian patients face significant delays accessing the kidney transplant waitlist. Cardiac assessment and systems issues are prominent sources of delay and efforts to address these areas may help to improve equity of access to kidney transplantation.

Barriers and challenges of returning patients back to community after renal transplantation in Central Australia.

BACKGROUND: The majority of patients living in remote communities of Central Australia must relocate to Alice Springs for their dialysis treatments. There is limited information available about the challenges and barriers that Aboriginal patients encounter in the process of returning back to their communities after renal transplantation. AIM: To determine the length of stay of patients in Alice Springs and challenges faced subsequent to renal transplantation, before they could safely return to their remote communities. METHODS: All transplant recipients from 2012 who are aged 18 years were analysed retrospectively. RESULTS: Thirty-six patients received renal transplantation from Central Australia. Of them, 25 were from very remote communities of whom 24 were Aboriginal. Average length of stay in Alice Springs post-transplantation prior to returning to community was 17.2 weeks (121 days). The most common challenge faced prior to returning to community was the need for monitoring and titration of immunosuppressive medication (100%) followed by infections (90%) and admissions to hospital (85%). The other common barrier was optimising glycaemic control (80%). Less common barriers included proficiency with self-monitoring of blood sugar levels (50%), social factors (40%), blood pressure control (25%), leukopenia (25%), safe housing (20%) and rejection episodes (15%). CONCLUSIONS: Multiple challenges are faced during post-transplantation period in Alice Springs that prolong the time before recipients from remote communities can return home. Some barriers such as titration of immunosuppression are inherent in the transplant journey. However, some factors might be modifiable prior to transplantation.

Sump Syndrome: A Rare Long-Term Complication of Choledochoduodenostomy.

Biliary sump syndrome is a rare condition. It is seen as a rare long-term complication in patients with a history of a side-to-side choledochoduodenostomy. In the era before endoscopic retrograde cholangiopancreatography, side-to-side choledochoduodenostomy was a common surgical procedure for the management of biliary obstruction. In the setting of a side-to-side choledochoduodenostomy, the bile does not drain through the distal common bile duct anymore. Therefore, the part of the common bile duct distal from the choledochoduodenostomy anastomosis consequently transforms into a poorly drained reservoir, making this so-called "sump" prone to accumulation of debris. These patients are prone to cholangitis. We present a 64-year-old man with a history of side-to-side choledochoduodenostomy who presented with manifestations of cholangitis. An endoscopic retrograde cholangiopancreatography confirmed a diagnosis of sump syndrome. The etiology, clinical manifestations, and treatment of biliary sump syndrome are discussed in this article.