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Tier 1 - Health status and outcomes

1.10 Kidney disease

Key messages

  • Chronic kidney disease (kidney conditions lasting 3 months or longer) accounted for 2.5% of total disease burden for Aboriginal and Torres Strait Islander people in 2018.
  • Death rates for kidney disease among Indigenous Australians declined by 36% between 2010 and 2019.
  • Between July 2017 and June 2019, there were around 475,000 hospitalisations for Indigenous Australians for care involving dialysis – corresponding to 290 hospitalisations per 1,000 population. Dialysis, which is used to treat kidney failure, was the leading cause of hospitalisation for Indigenous Australians in this period (44% of hospitalisations).
  • The rate of hospitalisation for care involving dialysis was 11 times as high for Indigenous Australians as for non-Indigenous Australians, based on age-standardised rates (453 and 42 per 1,000, respectively).
  • Between July 2017 and June 2019, hospitalisation rates for chronic kidney disease (excluding dialysis) was highest for Indigenous Australians aged 55–64 years (11 per 1,000). Indigenous females were twice as likely to be hospitalised for chronic kidney disease (excluding dialysis) as Indigenous males (crude rates of 5.4 and 2.7 per 1,000, respectively).
  • There were 950 new cases of treated kidney failure for Indigenous Australians in 2015–2017, 6.9 times the rate of non-Indigenous Australians.
  • Indigenous Australians receiving kidney replacement therapy for kidney failure were less likely to have received a kidney transplant than dialysis (13% compared with 87%), as at 31 December 2017.
  • Research shows that Indigenous patients with kidney failure are less likely to be wait-listed for transplantation than non-Indigenous Australians. Barriers to accessing kidney transplantation include systemic barriers such as service availability and likelihood of referral for transplant evaluation, and individual patient factors such as co-morbidities which affect the acceptability of a kidney transplant.
  • Between 2009–2010 and 2013–2014, there was a 42% increase in dialysis treatments delivered in central Australia, due in part to establishment of a mobile dialysis bus (the Purple Bus) in 2010. This helped to facilitate a substantial increase (360%) in the number of dialysis treatments delivered in remote settings. For patients on dialysis, mobile dialysis treatment can provide respite for patients closer to home to help maintain cultural obligations and connection to family and country.

Why is it important?

Kidneys are crucial to overall health, playing a vital role in cleaning the blood, removing waste and extra fluid from the body, managing Vitamin D production and regulating blood pressure (Kidney Health Australia 2020b). The kidneys can be permanently damaged by various acute illnesses or by progressive damage from other chronic conditions, such as uncontrolled elevated blood pressure and longstanding high blood sugar levels (untreated or poorly managed diabetes).

Chronic kidney disease refers to conditions of the kidney, lasting 3 months or longer, affecting the filtration and removal of waste from the blood by the kidneys. Chronic kidney disease progresses in five stages of increasing severity. Due to the asymptomatic nature of chronic kidney disease and low awareness among Australians of the risk factors, the condition remains under-recognised in Australia (Kidney Health Australia 2020a).

If the kidneys cease functioning adequately (known as kidney failure or end-stage kidney disease), waste products and excess water build up rapidly in the body. This can cause death within a few days or weeks unless the patient undergoes dialysis, or a new kidney is provided by transplant. Aboriginal and Torres Strait Islander people are less likely to receive kidney transplants than non-Indigenous Australians, so many require dialysis for the rest of their lives, impacting quality of life and social and emotional wellbeing for patients and their carers (see measure 1.18 Social and emotional wellbeing) (Chadban et al. 2005; Devitt et al. 2008; Khanal et al. 2018; Rix et al. 2015).

Kidney disease can also contribute to, or be impacted by, chronic diseases including cardiovascular (circulatory) disease and diabetes (AIHW 2016). These three diseases account for around one quarter of the disease burden in Australia and share a number of common risk factors such as tobacco smoking, overweight and obesity, and high blood pressure. Indigenous Australians have higher levels of risk factors associated with chronic diseases and are at a greater risk of developing chronic kidney disease, particularly those in remote areas. In many cases chronic kidney disease is preventable, as several key risk factors are modifiable (AIHW 2011).

The Chronic Kidney Disease Management in Primary Care (4th edition) recommends individuals with risk factors for chronic kidney disease to undergo a kidney health check every one to two years. This includes all Indigenous Australians 30 years or older, and those aged 18 to 29 years with one or more risk factors. Ideally, the kidney health check should use three tests: a blood test for kidney functioning (the estimated glomerular filtration rate - eGFR), a urine test to check for albumin (a protein that can pass into the urine when kidneys are damaged) and a blood pressure check (Kidney Health Australia 2020a). Through early detection and appropriate management, deterioration in kidney function can be reduced by up to 50% and possibly even reversed (Johnson 2004). 

Improved clarity for describing kidney disease

In June 2019, Kidney Disease: Improving Global Outcomes (KDIGO) convened a Consensus Conference with the goal of standardising the terminology to describe kidney function and disease, and of developing a glossary that could be used in scientific publications (Levey et al. 2020). Based on the recommendations from that conference, the following terms have been adopted in this measure.

Kidney disease – previously referred to as renal disease. The rationale for replacing ‘renal’ with ‘kidney’ included that, for English-language readers, ‘kidney’ is more familiar than ‘renal’, which tends to be used in more technical contexts. Where the kidney disease lasts more than 3 months, the preferred term is chronic kidney disease. Where the duration is less than or equal to 3 months, acute kidney disease is the preferred term.

Kidney failure –previously referred to as end-stage kidney disease. The rationale for changing the term included that ‘end-stage’ was not well-defined and could imply that end of life is near, when a patient can survive for years with treatment.

Kidney disease is considerably more likely to be recorded as an additional diagnosis than as the principal diagnosis in hospital separations. In 2013­–14, of almost 20,000 separations for Indigenous Australians where chronic kidney disease was recorded (excluding separations for dialysis), it was listed as the principal diagnosis in only one in seven cases (AIHW 2015). Similarly, kidney disease is much more likely to be recorded on death certificates as an associated cause of death rather than as the underlying cause (AIHW 2015). There is also evidence that it may be under-reported as a cause of death, with a study using linked data from Western Australia and New South Wales showing that substantial proportions of people hospitalised with or receiving treatment for kidney failure do not have kidney failure recorded on their death certificate (AIHW 2014a; Sypek MP 2018). Looking only at the principal diagnosis or underlying cause of death therefore under-represents the true impact of chronic kidney disease. Therefore, this measure also includes data about kidney disease as an additional diagnosis or an associated cause of death.

Burden of disease

For Indigenous Australians in 2018, chronic kidney disease accounted for:

  • 2.5% (6,067 DALY) of the total disease burden
  • 3.9% (4,416 YLL) of the fatal burden (premature death), and
  • 1.3% (1,651 YLD) of the non-fatal burden (years lived in ill health or with disability) (AIHW 2022a).

Most of the burden due to chronic kidney disease was fatal (73%), with only 27% due to non-fatal health loss.

After adjusting for differences in the age-structure between the two populations, the rate of burden due to chronic kidney disease for Indigenous Australians was 8 times the rate for non-Indigenous Australians (13 and 1.7 DALY per 1,000 people, respectively). Based on age-standardised rates, chronic kidney disease was the second leading cause of the gap between Indigenous and non-Indigenous females (6.5% of the gap), and was the sixth leading cause for males (4.0%).

These results exclude the indirect effects of chronic kidney disease. Chronic kidney disease is a risk factor for other diseases such as coronary heart disease, stroke, and dementia and the indirect burden is not accounted for using this approach.

Indirect effects of chronic kidney disease can be estimated in some cases by considering impaired kidney function as a risk factor for other diseases. In 2018, impaired kidney function was estimated to account for 5.0% of the total disease burden for Indigenous Australians, 8.4% of the fatal burden and 1.9% of the non-fatal burden (AIHW 2022a).

Findings

What does the data tell us?

Death rates for kidney diseases

Deaths data in this measure are from five jurisdictions for which the quality of Indigenous identification in the deaths data is considered to be adequate; namely, New South Wales, Queensland, Western Australia, South Australia and the Northern Territory. Data by remoteness are reported for all Australian states and territories combined (see Data sources: National Mortality Database).

In the period 2015–2019, 279 deaths of Indigenous Australians were due to kidney disease (including acute and chronic kidney disease), based on underlying cause of death. Kidney diseases accounted for 1.8% of Indigenous deaths. Of these, 58% were deaths of Indigenous females.

In 2015–2019, and based on underlying cause of death:

  • the rate of deaths due to kidney disease among Indigenous Australians was 7.8 deaths per 100,000 population, with a higher rate for females than males (9.1 compared with 6.5 per 100,000, respectively).
  • the death rate due to kidney diseases for Indigenous Australians was highest in the Northern Territory (17 per 100,000) and lowest in New South Wales (4.1 per 100,000).
  • the rate of deaths due to kidney disease among Indigenous Australians in Remote and very remote areas combined was 2.7 times the rate in non-remote areas (Major cities, Inner and Outer regional areas) (Table D1.23.2, Table D1.23.24, Table D1.23.30).

Kidney disease can contribute to deaths from other diseases (for example diabetes and circulatory diseases). In 2015–2019, there were 2,805 deaths among Indigenous Australians where kidney diseases were listed as the underlying or associated cause of death (Table D1.23.24).

After adjusting for differences in the age structure between the two populations, deaths due to kidney diseases for Indigenous Australians were 2.3 times the rate for non-Indigenous Australians (Table D1.10.4). Considering both underlying causes and associated causes of death, the rate of deaths related to kidney diseases was 2.8 times as high for Indigenous Australians as for non-Indigenous Australians (Table D1.23.24).

Hospitalisation for chronic kidney disease

Between July 2017 and June 2019, there were 474,745 hospitalisations for Indigenous Australians for care of chronic kidney disease involving dialysis, corresponding to a rate of 290 hospitalisations per 1,000 population (crude rate). Dialysis, which is used to treat kidney failure, was the leading cause of hospitalisation for Indigenous Australians (44% of hospitalisations).   

Excluding dialysis, there were 6,710 hospitalisations for Indigenous Australians due to chronic kidney disease – or 4.0 hospitalisations per 1,000 population (crude rate).

After adjusting for differences in the age structure of the two populations:

  • the rate of hospitalisation for chronic kidney disease that involved dialysis was 11 times as high for Indigenous Australians as for non-Indigenous Australians (age-standardised rates of 453 and 42 hospitalisations per 1,000 population, respectively).
  • the rate of hospitalisation for chronic kidney disease, excluding dialysis, was 3 times as high for Indigenous Australians as for non-Indigenous Australians (age-standardised rates of 5.3 and 1.7 per 1,000 population, respectively) (Table D1.10.5).

By age group, between July 2017 and June 2019, the hospitalisation rate for chronic kidney disease (excluding dialysis) among Indigenous Australians was highest for Indigenous Australians aged 55–64 (11 hospitalisations per 1,000 population). For non-Indigenous Australians, rates were highest for those aged 65 and over (4.5 per 1,000) (Table D1.10.6). Rates were higher for Indigenous females (5.4 per 1,000) than for Indigenous males (2.7 per 1,000) (crude rates) (Table D1.10.5).

For Indigenous Australians, across states and territories, the hospitalisation rate for chronic kidney disease (excluding dialysis) was lowest in Tasmania (crude rate of 1.0 per 1,000), and highest in the Northern Territory (9.3 per 1,000). Across remoteness areas, the hospitalisation rate for chronic kidney disease among Indigenous Australians was lowest in Major cities and Inner regional areas (2.8 and 2.5 per 1,000 respectively), and increased with increasing remoteness, with the highest rate in Very remote areas (8.8 per 1,000) (Table D1.10.7, Table D1.10.8).

When chronic kidney disease, excluding dialysis, is considered as either the principal or an additional diagnosis, the age-standardised hospitalisation rate for Indigenous Australians in 2018–19 was 5 times that for non-Indigenous Australians, with the difference being greater for females than for males (rate ratios of 6.6 and 3.6, respectively) (Table D1.10.21).

Kidney failure with replacement therapy

Kidney failure (also known as end-stage kidney disease) is the most severe form of chronic kidney disease. It occurs when the kidneys can no longer function adequately on their own. People living with kidney failure (also known as end-stage kidney disease) require either a kidney transplant or dialysis to maintain the functions normally performed by the kidneys. These treatments are collectively known as ‘kidney replacement therapy’. Note that not all people with kidney failure choose to undergo kidney replacement therapy. Instead, some opt to receive comprehensive conservative care, which focusses on patient care, quality of life and symptom control rather than on efforts to prolong life (AIHW 2022b).

The incidence of patients commencing kidney replacement therapy for kidney failure is higher for Indigenous Australians than for non-Indigenous Australians. In the period 2015–2017, after adjusting for differences in the age structure between the two populations, there were 64 new cases of kidney failure with replacement therapy for every 100,000 Indigenous Australians. This was 6.9 times the rate for non-Indigenous Australians (9.2 per 100,000) (Table D1.10.10).

The incidence of kidney failure with replacement therapy was highest for Indigenous Australians aged 55–64 (158 per 100,000). For non-Indigenous Australians, the rate was highest for those aged 65 and over (32 per 100,000) (Table D1.10.10, Figure 1.10.1).

Figure 1.10.1: Incidence of kidney failure with replacement therapy, by Indigenous status and age group, 2015–2017

This bar chart shows that, the incidence of kidney failure with replacement therapy generally increased with age for Indigenous and non-Indigenous Australians. Rates for Indigenous and non-Indigenous Australians aged 0-4 were the same (0.7 per 100,000 population). However, rates were higher for Indigenous Australians in all other age groups, ranging from 4.5 per 100,000 for those aged 15-24 to 152 per 100,000 for those aged 65 and over.

Source: Table D1.10.10. AIHW analysis of the Australia and New Zealand Dialysis and Transplant Registry.

The incidence rate of kidney failure with replacement therapy for Indigenous Australians was higher for females than for males (68 and 58 per 100,000, respectively). However, for non-Indigenous Australians, rates were higher for males than for females (12 and 6 per 100,000, respectively) (Table D1.10.11, Table 1.10-1).

Table 1.10-1: Incidence of kidney failure with replacement therapy, Indigenous Australians, by sex and jurisdiction (number and rate per 100,000), 2015–2017

Jurisdiction

Male Number

Male Rate

Male Rate ratio(a)

Female Number

Female Rate

Female Rate ratio(a)

 Persons Number

Persons Rate

 Persons Rate ratio(a)

NSW/ACT

73

30.1

2.4*

55

20.9

3.4*

128

25.3

2.7*

Vic

 n.p

n.p.

n.p.

 n.p

n.p.

n.p.

25

23.8

2.4*

Qld

116

62.9

5.6*

122

61.7

10.5*

238

62.4

7.3*

WA

106

115.6

9.7*

125

125.1

20.1*

231

121.0

13.4*

SA

17

56.1

4.6*

33

84.7

13.4*

50

71.1

7.8*

Tas

n.p.

n.p.

n.p.

n.p.

n.p.

n.p.

n.p.

n.p.

n.p.

NT

95

127.8

10.9*

180

233.0

25.3*

275

185.3

17.5*

Australia

420

58.2

4.7*

530

68.3

10.9*

950

63.6

6.9*

* Represents results with statistically significant differences at the p < 0.05 level in the Indigenous/non-Indigenous Australian comparisons.

(a) Rate ratio is the age-standardised rate for Indigenous Australians divided by the age-standardised rate for non-Indigenous Australians.

Note: n.p. is 'not published' as the rate is based on very small numbers.

Source: Table D1.10.11. AIHW analysis of Australia and New Zealand Dialysis and Transplant registry.

The incidence rate of kidney failure with replacement therapy for Indigenous Australians was lowest in Inner regional areas and highest in Very remote areas (20 and 164 per 100,000, respectively) (Table D1.10.12, Figure 1.10.2).

Figure 1.10.2: Incidence rates of kidney failure with replacement therapy, by Indigenous status and remoteness, 2015–2017

This bar chart shows kidney disease is significantly higher for Indigenous Australians than non-Indigenous Australians in all remoteness categories. For Indigenous Australians, the rate was particularly high in Very remote areas at (164 per 100,000) and lowest in Inner regional areas at (20 per 100,000). For non-Indigenous Australians, the rate was highest in Major cities (10 per 100,000) and lowest in Inner regional areas at (8 per 100,000). Nationally Indigenous Australians was highest (64 per 100,00).

Source: Table D1.10.12. AIHW analysis of Australia and New Zealand Dialysis and Transplant Registry.

In 2015–2017, the most common primary kidney disease of new kidney replacement therapy patients was diabetic kidney disease (also known as diabetic nephropathy) (45 per 100,000). The rate for diabetic kidney disease for Indigenous Australians was 15 times the rate of non-Indigenous Australians (3 per 100,000 population) (see ‘diabetic nephropathy’ data in Table D1.10.18, Figure 1.10.3).

Figure 1.10.3: Primary kidney disease of new patients, by Indigenous status, 2015–2017

This bar chart shows that, the most common type of primary renal disease of new patients was diabetic nephropathy (45 per 100,000 for Indigenous and 3 per 100,000 for non-Indigenous), followed by glomerulonephritis (5.3 per 100,000 for Indigenous and 1.8 per 100,000 for non-Indigenous) and hypertension (4.6 per 100,000 for Indigenous and 1.3 for non-Indigenous).

Source: Table D1.10.18. AIHW analysis of the Australia and New Zealand Dialysis and Transplant Registry.

As at 31 December 2017, there were 2,156 Indigenous Australians and 21,915 non-Indigenous Australians with kidney failure receiving replacement therapy. For Indigenous Australians, 87% were reliant on dialysis, compared with 49% of non‑Indigenous Australians, and 13% had received a kidney transplant compared with 51% of non‑Indigenous Australians (Table D1.10.14, Table D1.10-2).

Table 1.10.2: Total patients with kidney failure receiving replacement therapy, by Indigenous status and treatment, as at 31 December 2017

Treatment

Indigenous Number

Non-Indigenous Number

Indigenous Number per 100,000 (age-standardised)

Non-Indigenous Number per 100,000 (age-standardised)

Rate Ratio

Dialysis

1,884

10,835

374.3

38.8

9.7*

Transplant

272

11,080

49

42.8

1.1

Total

2,156

21,915

423.3

81.5

5.2*

* Represents results with statistically significant differences at the p < 0.05 level in the Indigenous/non-Indigenous comparisons.

Source: Table D1.10.14. AIHW analysis of Australia and New Zealand Dialysis and Transplant Registry.

Between 2011 and 2018, the prevalence of kidney failure with replacement therapy among Indigenous Australians increased from 209 to 269 per 100,000 (Table D1.10.16).

In 2014–2018, Indigenous Australians with kidney failure who were receiving kidney replacement therapy at the time of their death were most commonly receiving treatment with dialysis (45 per 100,000), followed by transplant (1.9 per 100,000). For non-Indigenous patients, the rate was 5.5 per 100,000 for dialysis and 0.8 per 100,000 for transplant.

Among Indigenous dialysis patients who died in 2014–2018, cardiovascular disease was the most common cause of death (35% of deaths), followed by withdrawal from dialysis (23%). The two most common causes of death among non-Indigenous dialysis patients were also withdrawal from dialysis (34% of deaths) and cardiovascular disease (30%) (Table D1.10.17).

Findings from ABS survey data

Based on the 2012–13 Australian Aboriginal and Torres Strait Islander Health Survey (AATSIHS), nearly 1 in 5 (18%) Indigenous Australian adults had blood/urine test results showing signs of kidney disease (infection, acute or chronic condition). Of these, the majority (12%) showed signs of being in the lowest category (Stage 1), very few (1.1 %) were in the most severe categories (Stages 4–5).

Of Indigenous Australians with indicators of chronic kidney disease in the 2012–13 AATSIHS, only 11% had reported having the condition and 89% of those with indicators did not know they had it (ABS 2014).

Based on the reported data from the 2018–19 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS), 3.4% of Indigenous adults reported having chronic kidney disease, 3 times the rate of non-Indigenous adults (1.1%), after adjusting for differences in the age structure between the two populations.

The rate of chronic kidney disease for Indigenous Australians increased with age, from 0.1% for those aged 18–24, to 7.6% for those aged 55 and over. The rates for non-Indigenous Australians followed a similar pattern with rates increasing from 0.5% for those aged 25–34, to 2.5% for those aged 55 and over.

Indigenous Australians living in remote areas were 2.3 times as likely as those living in non-remote areas to report having chronic kidney disease (6.4% and 2.8%, respectively) (Table D1.10.1).

In 2018–19, Indigenous adults who rated their health as fair/poor were 3 times as likely to report having kidney disease compared with those rating their health as excellent/very good/good (5.8% compared with 1.7%). Indigenous adults who reported having diabetes were 5 times as likely to report having kidney disease compared with those without diabetes (9.2% compared with 1.7%). Indigenous adults reporting cardiovascular problems were 8 times as likely to report having kidney disease compared with those without cardiovascular problems (8.1% compared with 1.0%). Indigenous Australians who were obese were twice as likely to report having kidney disease compared with those who were underweight/normal weight (3.8% compared with 1.9%) (Table D1.10.2).

Change over time

Over the decade from 2010 to 2019, the age-standardised death rate due to kidney diseases (including acute and chronic conditions) as the underlying cause of death declined by 36% for Indigenous Australians and 26% for non-Indigenous Australians (based on linear regression). However, the gap in the rates for the two populations did not change significantly over this period (Table D1.23.23, Figure 1.10.4).

Over a longer period, between 2006 and 2019, the age-standardised death rate due to kidney disease among Indigenous Australians decreased by 60%, compared with a 37% decrease for non-Indigenous Australians. This resulted in a narrowing of the gap by 71% over the period (Table D1.23.23, Figure 1.10.4). 

Figure 1.10.4: Age-standardised death rates and changes in the gap due to kidney diseases, by Indigenous status, NSW, Qld, WA, SA and NT, 2006 to 2019

This line chart shows that, over the decade from 2010 to 2019,  the death rate due to kidney disease decreased by 36% for Indigenous Australians and by 26% for non-Indigenous Australians. The bar chart shows that the absolute gap in rates between Indigenous and non-Indigenous Australians narrowed from a difference of 20 to 12 over the period. The dot plot shows the relative difference in rates between Indigenous and non-Indigenous Australians ranged from 2.9 times as high to 2.5 times as high for Indigenous Australians over the period.

Source: Table D1.23.23. AIHW National Mortality Database.

For hospitalisation trends, six jurisdictions are considered to have Indigenous identification of an adequate quality over the period 2006–07 to 2018–19 (New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory). In these jurisdictions, between 2006–07 and 2018–19, the age-standardised hospitalisation rate for chronic kidney disease (excluding dialysis) among Indigenous Australians decreased by 8% (based on linear regression). However, this varied by sex, with a 36% decline among Indigenous males but an increase of 14% among females.

Between 2009–10 and 2018–19, based on age-standardised rates, there was an overall 6% increase in hospitalisation rates for chronic kidney disease (excluding dialysis), with a 16% reduction among Indigenous males and a 22% increase among Indigenous females (Table D1.10.20, Figure 1.10.5).

Among non-Indigenous Australians, the age-standardised rate of hospitalisations for chronic kidney disease (excluding dialysis) increased by 23% over the decade to 2018–19, with increases for both males (18%) and females (29%). The gap was similar in 2009–10 as in 2018–19 (Table D1.10.20).

Figure 1.10.5: Age-standardised hospitalisation rates for a principal diagnosis of chronic kidney disease (excluding dialysis) for Indigenous Australians, by sex, NSW, Vic, Qld, WA, SA and NT, 2006–07 to 2018–19

This line chart shows that hospitalisation rates for chronic kidney diseases were higher for Indigenous females than for Indigenous males. The rate for Indigenous males was 6.5 per 1,000 in 2006-07 and 4.0 in 2018-19. The rate for Indigenous females was 6.5 in 2006-07 and 7.2 in 2018-19.

Source: Table D1.10.20 AIHW analysis of National Hospital Morbidity Database

Between 2001 and 2017, trends in the incidence of kidney failure with kidney replacement therapy show:

  • the crude incidence of kidney failure with kidney replacement therapy increased by 33% nationally, with significant increases in New South Wales (70%) and Western Australia (66%) driving this trend.
  • based on age-standardised rates, there was no significant change in the incidence of kidney failure with kidney replacement therapy for Indigenous Australians, indicating that the increases observed in the crude rate were due to changes in the age-structure of the population over time.
  • there was also no significant change in the age-standardised rate for non-Indigenous Australians, and no change in the gap over time (Table D1.10.13, Table D1.10.15, Figure 1.10.6).
Figure 1.10.6: Incidence rates for kidney failure with replacement therapy (age-standardised), by Indigenous status and sex, 2001–2017

This line chart shows that rates for treated end-stage kidney disease for Indigenous Australians were higher than for non-Indigenous Australians. Rates for females were higher in the Indigenous population but not the non-Indigenous population. For Indigenous males, the rate was 50 per 100,000 in 2001 and 64 per 100,000 in 2017 and for Indigenous females the rate was 82 per 100,000 in 2001 and 70 per 100,000 in 2017. For non-Indigenous males, the rates were steady and were 12 per 100,000 in both 2001 and 2017 and for non-Indigenous females the rate was 7 per 100,000 in both 2001 and 2017.

Source: Table D1.10.13. AIHW analysis of the Australia and New Zealand Dialysis and Transplant Registry.

What do research and evaluations tell us?

A significant amount of research has gone towards understanding the antecedents of kidney disease among Indigenous Australians, particularly in remote areas. Reviews of the literature have highlighted that kidney disease is multi-determinant, with risk factors including nutritional and developmental disadvantage, low birthweight, childhood infections, family history of kidney disease, as well as adult onset chronic diseases such as hypertension, and diabetes (Hoy 2014; Stumpers & Thomson 2013). Modifiable risk factors also exist including tobacco smoking, overweight and obesity, and insufficient physical activity (AIHW 2022b).

Kidney disease represents a major challenge for patients and the health system. In 2018–19, an estimated $1.8 billion of expenditure in the Australian health system was attributed to chronic kidney disease, representing a total of 1.3% of the total disease expenditure. Of this, 1.6 billion (89% of the total expenditure for chronic kidney disease) was spent on hospital services: $1 billion on admitted patient care in public hospitals, $330 million on admitted patient care in private hospitals, and $180 million on public hospital outpatient care (AIHW 2022b). 

Kidney health care is also logistically difficult, with challenges associated with diagnosing and treating kidney disease in remote Australia. Research shows that barriers in remote areas include not only accessing treatment, but also accessing appropriate information and education (Garrard et al. 2019). Flow-on effects from this include significant disruption to wellbeing, disempowerment and disconnection with communities from being away, and reveals challenges within the health care system in terms of cultural competency and equity (Hoy 2014; Stumpers & Thomson 2013).

Indigenous patients with kidney failure are less likely to be wait-listed for transplantation than non-Indigenous Australians (Khanal et al. 2018). The health system may pose barriers to accessing transplantation for Indigenous Australians such as reduced likelihood of referral for transplant evaluation; lack of comprehensive investigation of Indigenous patients; and communication and education limitations. There may also be individual patient factors that pose barriers such as incompatibility, higher rates of co-morbidities which affect the acceptability of a kidney transplant, and lower compliance to medical treatment as a result of communication problems (Stumpers & Thomson 2013). Geographic factors may also act as a barrier to transplantation, with research showing that Indigenous patients are not only less likely to be waitlisted for a transplant, but that this disparity increases with remoteness (Garrard et al. 2019; Khanal et al. 2018).

A study of Australian nephrologists (specialists of kidney disease) found that, in the absence of robust evidence on predictors of post-transplant outcomes, decisions on which patients to refer for kidney transplants were influenced by factors such as kidney shortages, compliance with dialysis as a predictor of compliance with transplant regimes (despite large differences in these factors), and experiences with other Indigenous patients (Anderson et al. 2012). Some of these issues are based on miscommunication between health care provider and patient, and a lack of appropriate patient education. This may lead to generalisations about the patient’s circumstances and therefore result in a bias towards considering Indigenous patients as high risk. Recognising and responding to these cultural differences appropriately will be crucial to improving the management of Indigenous patients. A more systematic approach to monitoring compliance to dialysis and transplant treatment for Indigenous patients will help in basing referral decisions on evidence (Anderson et al. 2012; Garrard et al. 2019).

High rates of Indigenous Australians in remote areas requiring dialysis leads to patients leaving their homes, communities and country to visit dialysis services in non-remote areas. Recent research found that almost one quarter (23.9%) of Australian kidney replacement therapy patients between 2005 and 2015 relocated, with patients relocating more frequently and earlier from outer regional, remote and very remote areas towards major cities and inner regional areas (Hassan et al. 2020).This disruption affects the health and wellbeing of patients. Between 2009–2010 and 2013–2014, there was a 42% increase in the number of dialysis treatments delivered in central Australia, due in part to establishment of a mobile dialysis bus (the Purple Bus) in 2010. This has helped to facilitate a substantial increase (360%) in the number of dialysis treatments delivered in remote settings (Gorham G et al. 2016).

Similarly, the South Australian Mobile Dialysis Truck allows patients to have dialysis closer to home for one- to two-week periods. An evaluation of the program found it improved the social and emotional wellbeing of patients by allowing them to fulfil cultural commitments and improved patient quality of life, as well as build positive relationships and trust between metropolitan nurses and remote patients. The Truck may also serve to improve cultural competency of health staff (Conway et al. 2018) (for more information see measure 2.13 Transport).

Implications

Reducing the chronic kidney disease burden for Indigenous Australians requires targeted interventions across the life course, starting before birth (Cass 2019). A focus on the health and social determinants, improving primary prevention, early detection and better management of kidney disease is necessary to lessen the impact on patients, and to reduce the cost to the health care system (Cass et al. 2004). Strategies could include more patient education and better management of modifiable risk factors such as controlling blood pressure, controlling high blood sugar levels, quitting smoking, maintaining a healthy diet and being physically active.

Mainstream service providers and specialists need to be culturally competent to better help Indigenous Australians, particularly from remote areas, to navigate the kidney disease continuum. Communication issues are a barrier to care and are frustrating for patients as well impacting on treatment outcomes (Anderson et al. 2008) (The George Institute for Global Health 2011). Where possible, Indigenous health practitioners and interpreters should be used in clinical interactions to overcome any cultural barriers.

Despite improved availability of services, disparities between Indigenous and non-Indigenous Australians in receiving kidney transplants remain. This may be a reflection of flow-on effects of Indigenous patients from remote areas undergoing dialysis which result in barriers to transplantation assessment, as well as factors such as cultural differences and communication issues within the health care system (as mentioned above). Reducing the disruption experienced by patients relocating for dialysis treatment may in turn improve clinical assessment for transplantation which may then improve the access of Indigenous patients to kidney transplantation (Khanal et al. 2018). For patients on dialysis, innovative use of mobile dialysis treatment can provide respite for patients closer to home to help maintain cultural obligations and connection to family and country, it may also improve the cultural competency of health care staff. In addition to the South Australian Mobile Dialysis Truck discussed above, another example of a mobile dialysis unit on wheels is The Purple Truck. Operating in remote communities in Central Australia, The Purple Truck has two dialysis chairs and enables Indigenous Australians with kidney failure to return to their traditional country and re-engage with Elders, family and their community (Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation).

The National Aboriginal and Torres Strait Islander Health Plan 2021-2031 (the Health Plan) released in December 2021 recognises early access to responsive primary care is also key to addressing the higher hospitalisation rates of Aboriginal and Torres Strait Islander people, where presentation often occurs at a later stage of disease and can lead to higher rates of mortality. The Health Plan emphasises that action to address cardiovascular disease, diabetes, ear, eye and renal health, and rheumatic heart disease, remain key priorities.

The National Strategic Action Plan for Kidney Disease includes Objective 2.4 to reduce the disproportionate burden of kidney disease on Indigenous Australians with a focus on implementing the Aboriginal and Torres Strait Islander Renal Health Roadmap and assisting the National Indigenous Kidney Transplantation Taskforce (NIKTT) in its work to improve access to, and outcomes of, kidney transplantation for Indigenous Australians (Kidney Health Australia 2019).

The NIKTT was established in 2019 with responsibilities for implementing and evaluating the recommendations outlined in a comprehensive review into the hurdles, service gaps and practical challenges faced by Indigenous Australians receiving treatment for kidney disease (The Transplantation Society of Australia and New Zealand). Key objectives of the NIKTT include enhancing data collection and reporting, piloting initiatives to improve patient equity and access, and evaluating cultural bias interventions (National Indigenous Kidney Transplantation Taskforce 2020).

A 2022 performance report outlines the progress made by NIKTT towards achieving its objectives (National Indigenous Kidney Transplantation Taskforce 2022). Staff shortages, operational delays and travel restrictions due to the COVID-19 pandemic impacted on the progress of some objectives, particularly efforts to pilot initiatives to improve equity and access. Progress was made towards some objectives, including the finalisation of data collection on a pilot for a project to establish a consistent framework for collecting and reporting data on access to transplantation, which will help to improve understanding of the inequities that impact on Indigenous Australians.

Other progress includes the finalisation of a scoping review that outlines priority recommendations to inform future activities that can help address cultural bias in service delivery for kidney transplantation for Indigenous Australians (Kelly et al. 2020). The review identified four key domains of action (each with several recommendations) to address cultural bias in kidney transplantation for Indigenous Australians: Inclusion of Aboriginal and Torres Strait Islander people; Workforce; Service delivery approach and models of care; and Structures and policies. The review emphasises the importance of co-designed and co-created participative approaches to research, implementation and evaluation for the development of new models of transplantation care for Indigenous Australians living with kidney disease (Kelly et al. 2020).

Having better integrated data collections can expand the knowledge base for guiding health policy and funding activities, and can help improve understanding of the joint role of diseases on death (AIHW 2012, 2014b). A fuller capture of deaths for which kidney disease is an associated cause of death, rather than limited to the underlying cause of death, would help provide a greater understanding of the burden of Indigenous kidney disease that is not currently well understood, which in turn will help policy development (Hoy et al. 2020).

The Policy Context is at Policies and Strategies.

References

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