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

Over 70% of patients requiring renal replacement therapy in the Top End of Northern Australia are Aboriginal and Torres Strait Islander peoples. Most must relocate from remote communities to urban areas for dialysis, thus leaving their families, culture and way of life.¹ In general, kidney transplantation provides better quality of life and survival, and would be a good option for most of these patients, if suitable, but access to kidney transplantation for this group is very low.^2–4 Published literature has demonstrated barriers to wait-listing for kidney transplantation.^5–8 Barriers can occur anywhere along the pathway of care from a patient’s first contact with the renal service to wait-listing. This was demonstrated by a recent case of severe dermatophyte infection requiring 394 days to achieve cure, leading to wait-listing 496 days after the patient started dialysis.⁹ As part of an ongoing quality improvement project, we reviewed the pathways to wait-listing for a kidney transplantation for Aboriginal and Torres Strait Islander Australians.

The aims of this study were to: (1) detail the current pathways to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander patients; (2) identify the practical causes of barriers to wait-listing; (3) recommend and implement improved processes to wait-listing; and (4) recommend and develop ongoing strategies for continuous improvement to improve the care for patients preparing for wait-listing.

The Department of Nephrology at a tertiary hospital in the Top End of Northern Australia is the hub of the Top End Renal Service (TERS), providing care, including renal replacement treatments, to people with kidney disease. The transplant service is coordinated by a lead nephrologist, transplant coordinator and up to two other nurses. There are nine nephrologists, most of whom work part-time. All are involved in the preparation and care of patients undergoing kidney transplantation. The Department runs a multidisciplinary service including one psychologist, two renal dieticians, two social workers and four Aboriginal Liaison Officers, all involved in the preparation of patients for kidney transplantation.

Kidney transplantation is performed in South Australia, approximately 3000 km away or 3.5 h travel by air. Patients spend approximately 4 weeks in South Australia after transplantation before being transferred to the tertiary hospital in the Top End.

Pretransplant assessments are performed by the patients’ primary nephrologists and the transplant team, consisting of a surgeon and physician, from South Australia. The team travels to the Top End three to four times yearly, but used to travel according to demand until 2017.

All clinicians proactively discuss transplantation as an option with all new patients referred to the renal service and refer all suitable patients for kidney transplantation.

The present study was supported and endorsed by members of the multidisciplinary, leadership and management teams within the Department after consultations. The project team consisted of the Executive Director of Medical Services (the lead for Clinical Governance and Quality and Safety for the Top End Health Service), the lead nephrologist for transplantation, the transplant coordinator and one other nephrologist with interest in quality improvement. We used standard methods of performing quality and continuous improvements projects.¹⁰

Data from medical notes and electronic medical records of patients referred to the renal transplant services were collected over the 20 months from 1 January 2017 to 31 August 2018. Data collected included demographic information, date of referral to the transplant service, when the transplant work-up started and all documented steps through the work-up process. Using Microsoft (Bellevue, WA, USA) Excel spreadsheets, data were entered on every step, including reasons for each decision made during the work-up process to either wait-listing for a transplant, holding off the process or being considered unsuitable for wait-listing.

Emails were sent to all four nursing staff, available nephrologists and other staff involved in the work-up process to list all the reasons identified as potential causes of the barriers to wait-listing.

No guidelines exist on what proportion of patients in a renal program should be wait-listed for kidney transplantation. In order to improve access to the waiting list for patients, TERS aims that at least 20% of all prevalent dialysis patients are on the waiting list. In order to achieve this, the work-up and assessment for wait-listing needs to be completed within 6–12 months for at least 80% of all incident dialysis patients. With over 350 prevalent patients on dialysis and another 40–60 incident patients annually, 70 patients should be on the waiting list and the work-up process should be completed for 32–48 new patients within 12 months of starting dialysis. However, only 15 patients (4%) are currently on the waiting list and 18–24 are undergoing transplantation assessment within 12 months of dialysis initiation.

In 2010, a new strategy for offering transplantation for all potential and suitable prevalent patients on maintenance dialysis was instituted to improve access to transplantation. A summary review of the kidney transplantation activities from 2010 to 2017 was performed to obtain an overview of the number of transplants performed during this period. We also included the data from 2007 to 2010 for comparison.

TERS uses the same transplant work-up and assessment processes regardless of ethnic background. Processes and pathways to wait-listing patients were identified and mapped onto flow charts to: (1) provide a clear visual presentation of the processes; (2) identify potential problem areas; (3) provide an opportunity to compare the actual versus the ideal; and (4) identify where additional data needed to be collected.

Initially, details of all potential causes of barriers were determined to enable: (1) the main causes to be discovered; (2) the problem(s) to be focused on; (3) a snapshot of the collective knowledge to be created for all involved in the project; and (4) analysis and efforts to be focused on the main causes. The main causes were divided into four categories (causes related to staffing; patient-level causes; systems-level causes; and equipment and environmental causes) and plotted onto a cause and effect (Ishikawa/Fishbone) diagram.

Descriptive analysis of the pathway to listing from a patient’s first contact with TERS was performed. Based on the Pareto principle, which states that 20% of the sources cause 80% of any problem,¹⁰ Pareto charts were constructed to: (1) identify the real main causes and develop a clear recommendation for strategies to overcome these problems; (2) focus efforts on the problems that would offer the greatest potential for improvement by showing their relative frequency or size in a descending bar graph; and (3) help prevent ‘shifting the problem’, whereby the ‘solution’ removes some causes but worsens others.

Data are presented as the mean ± s.d. for normally distributed continuous data and as the median with interquartile range (IQR) for data with a skewed distribution. Frequencies are expressed as percentages. Student t-test or Mann–Whitney U-tests were used for comparisons as appropriate. Details of reasons for delays as provided by staff were tabulated. All analyses were performed using Stata version 15.1 (StataCorp, College Station, TX, USA) and Microsoft Excel.

This project was approved by the Human Research Ethics Committee (HREC) of the Northern Territory Department of Health and Menzies School of Health Research (HREC: 2019-3285).

The effects of changes introduced in 2010 started to be evident from 2013, with a small increase in the number of transplants among Aboriginal and Torres Strait Islander patients from 2013 to 2017 (Fig. 1). The number of transplants per year increased significantly from a median of 2.5 (IQR 1.3–3) in 2013 to 5 (IQR 4–6) in 2017 (P < 0.001). Overall, there was no significant difference in the median number of transplants per year between Aboriginal and Torres Strait Islanders (3.5; 95% confidence interval (CI) 2.3–4.8) and non-Indigenous Australians (4.2; 95% CI 2.0–6.4; P = 0.5821).

Fig. 1.  Number of transplants by ethnicity in the Top End of Northern Australia: 2007–17. The effects of changes introduced in 2010 started to become evident from 2013, with a small increase in the number of transplants for Indigenous patients. The time taken for the change to be evident is reflective of the long work-up process for Indigenous Australians. A significant number of transplants for non-Indigenous Australians were from living donors.

Fig. 2 shows the potential causes of barriers mapped on a Fishbone/Ishikawa diagram, Fig. 3 details the current pathway from contact with the renal services to starting the work-up and Fig. 4 shows the current processes from starting work-up to wait-listing.

Fig. 2.  Fishbone (Ishikawa) diagram of the potential causes of poor access or barriers to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander Australians.

Fig. 3.  Flow chart showing details of the current pathways from referral to the Top End Renal Service (TERS) to the start of transplant work-up. CKD, chronic kidney disease; HD, haemodialysis; KRT, kidney replacement treatment; KTx, kidney transplantation; PCIS, primary care information system; PD, peritoneal dialysis.

Fig. 4.  Flow chart showing the current pathway from the start of transplant work-up to when patients are wait-listed for kidney transplantation. The pathway is the same for all patients referred to the Top End Renal Service (TERS) regardless of ethnic background. CNARTS, Central and North Adelaide Renal Transplantation Service; PCIS, primary care information system.

Of 102 patients who commenced the transplant work-up process, 83 (81.4%) were Aboriginal and Torres Strait Islanders. The mean age was 50.1 ± 8.1 years, work-up was progressing in 73 (71.6%) but was on hold in 29 (28.4%). Of the 29 patients on hold, 27 (92.9%) were Aboriginal and Torres Strait Islanders.

One major barrier to listing for kidney transplantation was health service workforce resourcing for the transplant program, with only one full-time nurse position and one other position shared by three nurses rotating from the dialysis unit. With no dedicated administration support, the nurses’ workload included following-up the results of investigations, reminding patients to attend appointments, arranging clinics and post-transplantation patient care and caring for non-transplant renal patients on immunosuppression.

The Pareto chart in Fig. 5 shows the actual causes of barriers among the 102 patients. Patients not attending or missing dental investigations and other specialist appointments was common. The reasons for attending or missing dental investigations were multifactorial and included competing priorities (e.g. other important engagements such as funerals, important festivals and community commitments), problems with patient transport to appointments, poor communication between health services and patients about their appointments, a lack of patient accommodation, patients being uncontactable and patients losing interest in the whole process.

Fig. 5.  Pareto chart showing the actual causes of the barriers during the work-up to wait-listing for kidney transplantation among Aboriginal and Torres Strait Islander Australians. ‘Did not attend’ refers to patients failing to attend expected appointments or investigations. The y-axis shows the number of episodes each cause was recorded for among the 102 patients in this study.

Significant comorbidities, such as cardiac disease, diabetes and its complications, skin,⁹ respiratory and urinary tract infections, poor oral health (a reflection of poor socioeconomic status) and overweight and obesity were also common. All these required more investigations and multispeciality involvement.

Other health service-level factors included a lack of or delayed appointments, long waiting lists for dental and other specialist services (e.g. surgery, urology, ear nose and throat, psychology), cancellation of appointments, a shortage of dialysis space for patients travelling from remote communities for specialised investigations, a requirement for complex medical or surgical procedures and a shortage of hospital admission beds,

Causes identified by staff as barriers were similar (Table 1).

Table 1.  Causes of barriers to wait-listing as identified and reported by staff members
ENT, ear, nose and throat; TEPTS, Top End Patient Transport System

It took 3 years for transplant numbers to increase after implementation of changes in 2010, reflecting the time taken to wait-list patients due to the barriers described above. All Aboriginal and Torres Strait Islander patients received deceased donor transplants. The shortage of donors may affect the rates of transplantation. However, even with the current donor rates, the number of Aboriginal and Torres Strait Islander patients on the waiting list is still unacceptably low.

The absence of an overall difference in the transplant numbers between Aboriginal and Torres Strait Islander and non-Indigenous patients suggests that the numbers of deceased donor transplants was higher for the former, because most non-Indigenous patients received transplants from living donors. However, the rates of transplantation for Aboriginal and Torres Strait Islander patients are too low because these patients account for over 70% of the dialysis cohort.

Changes implemented include improved data capture and recording, improved patient-level communication, strategies for using effective and culturally appropriate communication methods, such as Yarning Circles,^1,11 timely access to specialists and working with patient navigators to assist patients through the work-up process. Other culturally appropriate communication and transplant educational tools to improve engagement are being developed.

Cardiac services now prioritise transplant work-up patients. This change is being broadened to other specialist areas. An agreement has been reached with dental services to prioritise transplant work-up patients.

The results from this project contributed to the national performance report on improving access to transplantation for Aboriginal and Torres Islander patients across Australia submitted to the Commonwealth Department of Health.¹²

Proactive patient and community engagement and increased collaboration with primary health care to improve general health for patients before they start dialysis will eliminate delays. A patient reference group for TERS has been set up.¹³

Performing investigations closer to patients’ communities and increasing the use of telehealth will improve access to specialists. The recent appointment of a psychologist within the renal services has closed a significant gap in the service.

Several key recommendations are summarised in Box 1.

Barriers to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander Australians are complex and can be addressed by innovative improvements in the provision of health care. This includes increasing the Aboriginal and Torres Strait Islander workforce to provide culturally appropriate patient navigation of the healthcare system and improving communication processes between health services and patients. There is a need for streamlined investigations and coordinated specialist services.

The authors declare no competing interests.