The 'ABC' of respiratory disorders among adult Indigenous people: asthma, bronchiectasis and COPD among Aboriginal Australians - a systematic review.

BACKGROUND: Aboriginal Australians are reported to have higher presence of chronic respiratory diseases. However, comprehensive evidence surrounding this is sparse. Hence, a systematic review was undertaken to appraise the current state of knowledge on respiratory health in the adult Aboriginal Australians, in particular among the three most common respiratory disorders: asthma, bronchiectasis and chronic obstructive pulmonary disease (COPD). METHODS: A systematic review of primary literature published between January 2012 and October 2022, using the databases PubMed and Scopus, was conducted. Studies were included if they reported adult Aboriginal Australian prevalence's or outcomes related to asthma, bronchiectasis or COPD, and excluded if adult data were not reported separately, if Aboriginal Australian data were not reported separately or if respiratory disorders were combined into a single group. Risk of bias was assessed by both Joanne Briggs Institute checklists and Hoys' bias assessment. Summary data pertaining to prevalence, lung function, symptoms, sputum cultures and mortality for each of asthma, bronchiectasis and COPD were extracted from the included studies. RESULTS: Thirty-seven studies were included, involving approximately 33 364 participants (71% female). Eighteen studies reported on asthma, 21 on bronchiectasis and 30 on COPD. The majority of studies (94%) involved patients from hospitals or respiratory clinics and were retrospective in nature. Across studies, the estimated prevalence of asthma was 15.4%, bronchiectasis was 9.4% and COPD was 13.7%, although there was significant geographical variation. Only a minority of studies reported on clinical manifestations (n=7) or symptoms (n=4), and studies reporting on lung function parameters (n=17) showed significant impairment, in particular among those with concurrent bronchiectasis and COPD. Airway exacerbation frequency and hospital admission rates including mortality are high. DISCUSSION: Although risk of bias globally was assessed as low, and study quality as high, there was limited diversity of studies with most reporting on referred populations, and the majority originating from two centres in the Northern Territory. The states with the greatest Aboriginal Australian population (Victoria and New South Wales) reported the lowest number of studies and patients. This limits the generalisability of results to the wider Aboriginal Australian population due to significant environmental, cultural and socioeconomic variation across the population. Regardless, Aboriginal Australians appear to display a high prevalence, alongside quite advanced and complex chronic respiratory diseases. There is however significant heterogeneity of prevalence, risk factors and outcomes geographically and by patient population. Further collaborative efforts are required to address specific diagnostic and management pathways in order to close the health gap secondary to respiratory disorders in this population.

The stay strong app as a self-management tool for first nations people with chronic kidney disease: a qualitative study.

BACKGROUND: The high burden of chronic kidney disease in First Nations peoples requires urgent attention. Empowering people to self-manage their own condition is key, along with promotion of traditional knowledge and empowerment of First Nations communities. This study explores the potential of a culturally responsive tool, already found to have high acceptability and feasibility among First Nations people, to support self-management for First Nations people with kidney failure. The Stay Strong app is a holistic wellbeing intervention. This study explores the suitability of the Stay Strong app to support self-management as shown by the readiness of participants to engage in goal setting. Data were collected during a clinical trial which followed adaption of research tools and procedures through collaboration between content and language experts, and community members with lived experience of kidney failure. METHODS: First Nations (i.e., Aboriginal and Torres Strait Islander) participants receiving haemodialysis in the Northern Territory (n = 156) entered a three-arm, waitlist, single-blind randomised controlled trial which provided collaborative goal setting using the Stay Strong app at baseline or at 3 months. Qualitative data gathered during delivery of the intervention were examined using both content and thematic analysis. RESULTS: Almost all participants (147, 94%) received a Stay Strong session: of these, 135 (92%) attended at least two sessions, and 83 (56%) set more than one wellbeing goal. Using a deductive approach to manifest content, 13 categories of goals were identified. The three most common were to: 'connect with family or other people', 'go bush/be outdoors' and 'go home/be on country'. Analysis of latent content identified three themes throughout the goals: 'social and emotional wellbeing', 'physical health' and 'cultural connection'. CONCLUSION: This study provides evidence of the suitability of the Stay Strong app for use as a chronic condition self-management tool. Participants set goals that addressed physical as well as social and emotional wellbeing needs, prioritising family, country, and cultural identity. The intervention aligns directly with self-management approaches that are holistic and prioritise individual empowerment. Implementation of self-management strategies into routine care remains a key challenge and further research is needed to establish drivers of success.

Comparison of clinical manifestation among Australian Indigenous and non-indigenous patients presenting with pleural effusion.

BACKGROUND: There is sparse evidence in the literature in relation to the nature and causes of pleural effusion among Australian Indigenous population. AIM: To investigate the clinical and demographic characteristics of adult indigenous patients presenting with pleural effusion in the Northern Territory of Australia. METHODS: In this retrospective study, indigenous and non-indigenous adults diagnosed to have pleural effusion over a 2-year study period were included for comparative analysis. RESULTS: Of the 314 patients, 205 (65%) were non-indigenous and 52% were male. In comparison with non-indigenous patients, the indigenous patients were younger (50 years (interquartile range (IQR) 39-60) vs 63 years (IQR 52-72); P < 0.001), female (61% vs 41%; P = 0.001), had a higher prevalence of renal and cardiovascular disease and tended to have exudative effusion (93% vs 76%; P = 0.032). Infections were judged to be the most common cause of effusion in both groups, more so among the indigenous cohort. Effusion secondary to renal disease was higher (13% vs 1%; P < 0.001) among Australian Indigenous patients, but in contrast, malignant effusions were higher (13% vs 4%; P = 0.004) among non-indigenous patients. Length of hospital stay was longer for indigenous patients (P = 0.001), and a greater proportion received renal dialysis (13% vs 1%; P < 0.001). Intensive care unit admission rates were higher with infective aetiology of pleural effusion (82% vs 53% indigenous and 44% vs 39% non-indigenous respectively). Re-presentations to hospital were higher among indigenous patients (46% vs 33%; P = 0.046) and were associated with renal and cardiac disease and malignancy in non-indigenous patients. CONCLUSION: There are significant differences in the way pleural effusion manifests among Australian Indigenous patients. Understanding these differences might facilitate approaches to management and to implementation of strategies to reduce morbidity and mortality in this population.

Characteristics and health outcomes of patients hospitalised with hypomagnesaemia: a retrospective study from a single centre in the Northern Territory of Australia.

BACKGROUND: Magnesium is an essential cation in the human body involved in many processes in the human body. Hypomagnesium has been linked to many poor health outcomes. AIMS: To study the clinical and biochemical characteristics and health outcomes of patients admitted and found to have hypomagnesaemia in an Australian hospital with a high proportion of Indigenous Australians. METHODS: A retrospective cohort study was conducted of all patients with hypomagnesaemia hospitalised between 1 August 2008 and 31 December 2014 at Royal Darwin Hospital. All relevant demographic, clinical and biochemical data were collected from patients' medical records. The hospital database was reviewed in January 2018 for mortality of all included patients. RESULTS: A total of 876 patients had been admitted with a confirmed diagnosis of hypomagnesaemia during the study period, with mean follow-up period of 4.0 ± 2.7 years. The mean age at admission was 52.4 ± 19.1 years, 52.2% were females and 56.5% were Indigenous Australians. Chronic kidney disease (99.7%), excessive alcohol consumption (45.7%), hypertension (43.9%) and respiratory diseases (15.0%) were the most common conditions in these patients. Hypomagnesaemia was associated with prolonged length of hospital stay. Most patients did not receive treatment for hypomagnesaemia during admission. During the follow-up period, 38.6% of patients died, and the most common causes of death were malignancies (29.9%). CONCLUSION: Hypomagnesaemia was a common and undertreated condition in hospitalised patients and was associated with poor health outcomes. Therefore, hospitals should develop guidelines for replacing and monitoring magnesium levels during hospitalisation, achieving better outcomes.

Effectiveness of Wellbeing Intervention for Chronic Kidney Disease (WICKD): results of a randomised controlled trial.

BACKGROUND: End stage kidney disease (ESKD) is associated with many losses, subsequently impacting mental wellbeing. Few studies have investigated the efficacy of psychosocial interventions for people with ESKD and none exist for Indigenous people, a population in which the ESKD burden is especially high. METHODS: This three-arm, waitlist, single-blind randomised controlled trial examined efficacy of the Stay Strong App in improving psychological distress (Kessler distress scale; K10), depressive symptoms (adapted Patient Health Questionnaire; PHQ-9), quality of life (EuroQoL; EQ. 5D) and dialysis adherence among Indigenous Australians undergoing haemodialysis in central and northern Australia (Alice Springs and Darwin), with follow up over two 3-month periods. Effects of immediate AIMhi Stay Strong App treatment were compared with those from a contact control app (The Hep B Story) and treatment as usual (TAU). Control conditions received the Stay Strong intervention after 3 months. RESULTS: Primary analyses of the full sample (N = 156) showed statistically significant decreases in K10 and PHQ-9 scores at 3 months for the Hep B Story but not for the Stay Strong app or TAU. Restricting the sample to those with moderate to severe symptoms of distress or depression (K10 > =25 or PHQ-9 > =10) showed significant decreases in K10 and PHQ-9 scores for both Stay Strong and Hep B Story. No significant differences were observed for the EQ-5D or dialysis attendance. CONCLUSIONS: Findings suggest that talking to people about their wellbeing and providing information relevant to kidney health using culturally adapted, locally relevant apps improve the wellbeing of people on dialysis. Further research is required to replicate these findings and identify active intervention components. TRIAL REGISTRATION: ACTRN12617000249358 ; 17/02/2017.

Review of current pathways to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander peoples with end-stage kidney disease in the Top End of Northern Australia.

Published evidence confirms poor access to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander Australians from the Northern Territory. This study aimed to identify the practical causes and recommend improvement. Pathways to wait-listing for a kidney transplant were reviewed to identify potential barriers. Processes were mapped to identify potential problem areas, provide comparison of the actual versus the ideal, identify where data needed collecting and provide clear presentation of the processes. Staff involved in the work-up of patients going for wait-listing were asked to list the barriers. Data were collected for patients from the transplant database between 1 January 2017 to 31 August 2018. Quality improvement statistical processes and charts were used to analyse and present the results. There were 102 patients in the transplant work-up process; 81.4% were Aboriginal and Torres Strait Islander, 71.6% were progressing with the work-up, 28.4% were on-hold. Of the 29 patients on hold, 92.9% were Aboriginal and Torres Strait Islander. Causes of delays to wait-listing included: failure to attend appointments due to competing priorities and communication barriers, access and navigating complex pathways to specialist services, transport, co-morbidities requiring multiple tests and multiple specialty services, and pressures on dialysis and hospital bed capacity. In conclusion, barriers to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander Australians are complex and can be addressed by redesigning healthcare provision, including increasing the Aboriginal and Torres Strait Islander workforce to provide education and patient navigation of the healthcare system and improve communication, streamlining investigations and coordinating specialist services.

Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease.

BACKGROUND: Chronic kidney disease is an increasingly common health problem for Aboriginal and Torres Strait Islander people. It is associated with multiple concurrent psychosocial stressors frequently resulting in negative impacts on emotional and social wellbeing. There is need for well-designed intervention studies to provide evidence of effective treatment for comorbid depression or other mental illness in this setting. Attention to early phase piloting and development work is recommended when testing complex interventions. This paper documents feasibility testing and adaptation of an existing culturally responsive brief wellbeing intervention, the Stay Strong App, and three commonly used wellbeing outcome measures, in preparation for a clinical trial testing effectiveness of the intervention. METHODS: The Stay Strong App, which has not been used in the setting of Chronic Kidney Disease before, is reviewed and adapted for people with comorbid wellbeing concerns through expert consensus between research team and an Expert Panel. The outcome measures (Kessler 10, Patient Health Questionnaire 9, and EuroQoL) are valid, reliable, and commonly used tools to assess various aspects of wellbeing, which have also not been used in this context before. Feasibility and acceptability are examined and developed through 3 stages: Pilot testing in a purposive sample of five haemodialysis patients and carers; translation of outcome measures through collaboration between the Aboriginal Interpreter Service, Aboriginal and Torres Strait Islander research officers and the research team; and conversion of translated outcome measures to electronic format. RESULTS: Research team and expert panel consensus led to adaptation of the Stay Strong App for renal patients through selective revision of words and images. Pilot testing identified challenges in delivery of the wellbeing measures leading to word changes and additional prompts, integration of audio translations in 11 local Indigenous languages within an interactive Outcome Measures App, and related research protocol changes. CONCLUSION: Modelling the complex intervention prior to full-scale testing provided important information about the design of both the outcome measures and the intervention. These changes are likely to better support success in conduct of the clinical trial and future implementation of the intervention in clinical settings.

Incident haemodialysis and outcomes in the Top End of Australia.

Objective The Northern Territory has the highest incidence of haemodialysis care for end-stage kidney disease in Australia. Although acute kidney injury (AKI) is a recognised risk for chronic kidney disease (CKD), the effect of AKI causing incident haemodialysis (iHD) is unknown. Audits identifying antecedents of iHD may inform health service planning. Thus, the aims of this study were to describe: (1) the development of an iHD recording system involving patients with AKI and CKD; and (2) the incidence, patient characteristics and mortality for patients with dialysis-requiring AKI. Methods A retrospective data linkage study was conducted using eight clinical and administrative datasets of adults receiving iHD during the period from July 2011 to December 2012 within a major northern Australian hospital for AKI without CKD (AKI), AKI in people with pre-existing CKD (AKI/CKD) and CKD (without AKI). The time to death was identified by the Northern Territory Register of deaths. Results In all, 121 iHD treatments were provided for the cohort, whose mean age was 51.5 years with 53.7% female, 68.6% Aboriginal ethnicity and 46.3% with diabetes. iHD was provided for AKI (23.1%), AKI/CKD (47.1%) and CKD (29.8%). The 90-day mortality rate was 25.6% (AKI 39.3%, AKI/CKD 22.8%, CKD 19.4%). The 3-year mortality rate was 45.5% (AKI 53.6%, AKI/CKD 22.8%, CKD 19.4%). The time between requesting data from custodians and receipt of data ranged from 15 to 1046 days. Conclusion AKI in people with pre-existing CKD was a common cause of iHD. Health service planning and community health may benefit from AKI prevention strategies and the implementation of sustainable and permanent linkages with the datasets used to monitor prospective incident haemodialysis. What is known about the topic? AKI is a risk factor for CKD. The Northern Territory has the highest national incidence rates of dialysis-dependent end-stage kidney disease, but has no audit tool describing outcomes of dialysis-requiring AKI. What does this paper add? We audited all iHD and showed 25.6% mortality within the first 90 days of iHD and 45.5% overall mortality at 3 years. AKI in people with pre-existing CKD caused 47.1% of iHD. What are the implications for practitioners? Health service planning and community health may benefit from AKI prevention strategies and the implementation of sustainable and permanent linkages with the datasets used to monitor prospective incident haemodialysis.

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

BACKGROUND: Australian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs. AIM: To describe the experiences of health care users of a large government kidney healthcare service provider. METHODS: Within a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions. RESULTS: Client characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function. CONCLUSION: Four major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

Wellbeing intervention for chronic kidney disease (WICKD): a randomised controlled trial study protocol.

BACKGROUND: Incidence of end stage kidney disease (ESKD) for Indigenous Australians is especially high in remote and very remote areas of Australia (18 and 20 times the rate of comparable non-Indigenous people). Relocating away from family and country for treatment, adjusting to life with a chronic condition and time lost to dialysis cause grief and sadness which have immense impact on quality of life and challenges treatment adherence. We describe the first randomised controlled trial to address both chronic disease and mental health in Indigenous people with ESKD, which is the first to test the effectiveness of a culturally adapted e-mental health intervention in this population. It builds on an existing program of mental health research with demonstrated efficacy - the Aboriginal and Islander Mental Health Initiative (AIMhi) - to test the newly developed electronic motivational care planning (MCP) therapy - the AIMhi Stay Strong App. METHODS: This is a 3-arm, waitlist, single-blind randomised controlled trial testing the efficacy of the Stay Strong App in improving psychological distress, depressive symptoms, quality of life and treatment adherence among Indigenous clients undergoing haemodialysis for ESKD in Alice Springs and Darwin with follow up over two periods of 3 months (total of 6 months observation). The study compares the efficacy of MCP using the AIMhi Stay Strong App with two control groups (control app intervention and treatment as usual) on participant-reported psychological distress (the primary outcome) using the Kessler Distress Scale (K10); depressive symptoms using the adapted Patient Health Questionnaire (PHQ-9); quality of life using the EuroQoL instrument (EQ5D) and adherence to dialysis treatment planning through file audit. Participants are randomised to receive MCP either at baseline (early treatment) or after 3 months (delayed treatment). The study also examines the cost effectiveness of this therapy in this setting through examination of health care service utilisation across groups during the first 3 months. DISCUSSION: This project will contribute much needed evidence on the efficacy of an electronic wellbeing intervention for Indigenous people with ESKD - a group in which distress is likely to be unacceptably high, yet relatively untreated. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry; ACTRN12617000249358 ; Date registered: 17/02/2017.

Telenephrology: current perspectives and future directions.

There is increasing interest in telemedicine among physicians and patients; however, the evidence regarding the quality of care delivered by telemedicine, and telenephrology in particular, compared with in-person care is limited. In this review, different electronic modalities used to deliver nephrology care are reviewed and critiqued, with a focused analysis from the Australian and United States perspectives. Both countries are geographically expansive with significant rural populations where access to nephrology care is limited. However, their health care systems are organized differently. The Australian health care system is a mostly nonprofit, single-payer system, whereas the United States system is more fractured with a greater proportion of patients covered by for-profit private insurance or no insurance coverage. Videoconferencing is widely used in Australia to manage kidney disease including chronic kidney disease, dialysis, pediatric nephrology, and post-kidney transplantation care. In contrast, the United States telenephrology experience is limited, with most reports originating from the Veterans Health Administration, a single-payer system providing care for nearly 9 million veterans, ∼3 million of whom reside in rural communities. Preliminary reports from the Veterans Health Administration suggest that that delivery of nephrology care via videoconferencing results in clinical outcomes that are at least equivalent to in-person care and improved patient adherence to scheduled appointments. Nevertheless, large, adequately controlled studies are needed to identify patient populations that are most likely to benefit from telenephrology and to determine the optimal systems for the delivery of telenephrology care.

Comparison of creatinine and cystatin C based eGFR in the estimation of glomerular filtration rate in Indigenous Australians: The eGFR Study.

BACKGROUND: The Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) equation that combines creatinine and cystatin C is superior to equations that include either measure alone in estimating glomerular filtration rate (GFR). However, whether cystatin C can provide any additional benefits in estimating GFR for Indigenous Australians, a population at high risk of end-stage kidney disease (ESKD) is unknown. METHODS: Using a cross-sectional analysis from the eGFR Study of 654 Indigenous Australians at high risk of ESKD, eGFR was calculated using the CKD-EPI equations for serum creatinine (eGFRcr), cystatin C (eGFRcysC) and combined creatinine and cystatin C (eGFRcysC+cr). Reference GFR (mGFR) was determined using a non-isotopic iohexol plasma disappearance technique over 4h. Performance of each equation to mGFR was assessed by calculating bias, % bias, precision and accuracy for the total population, and according to age, sex, kidney disease, diabetes, obesity and c-reactive protein. RESULTS: Data were available for 542 participants (38% men, mean [sd] age 45 [14] years). Bias was significantly greater for eGFRcysC (15.0mL/min/1.73m2; 95% CI 13.3-16.4, p<0.001) and eGFRcysC+cr (10.3; 8.8-11.5, p<0.001) compared to eGFRcr (5.4; 3.0-7.2). Accuracy was lower for eGFRcysC (80.3%; 76.7-83.5, p<0.001) but not for eGFRcysC+cr (91.9; 89.3-94.0, p=0.29) compared to eGFRcr (90.0; 87.2-92.4). Precision was comparable for all equations. The performance of eGFRcysC deteriorated across increasing levels of c-reactive protein. CONCLUSION: Cystatin C based eGFR equations may not perform well in populations with high levels of chronic inflammation. CKD-EPI eGFR based on serum creatinine remains the preferred equation in Indigenous Australians.

Membranous nephropathy in a patient with hereditary angioedema: a case report.

INTRODUCTION: Hereditary angioedema is the commonest inherited disorder of the complement system and has been associated with several immune glomerular diseases. A case of nephrotic syndrome and renal impairment due to idiopathic membranous glomerulonephritis in a patient with hereditary angioedema has not been described before. CASE PRESENTATION: We present the first reported case of the association of membranous nephropathy and hereditary angioedema in a 43-year-old male Caucasian patient who presented with acute intestinal angioedema, hypertension, acute pancreatitis, renal impairment and generalised body swelling due to severe nephrotic syndrome. We present the challenges involved in the clinical management of the patient. CONCLUSION: This patient's presentation with severe nephrotic syndrome, renal impairment and hypertension required aggressive treatment of the membranous nephropathy given the high risk for progression to end stage renal failure. The contraindication to angiotensin converting enzyme inhibitors and angiotensin II receptor blockers in this patient, the lack of published evidence on the use of alkylating agents and other immunosuppressive agents in patients with hereditary angioedema and the lack of published data on the management of similar cases presented a clinical challenge in this patient's management.