of Aboriginal and Torres Strait Islander adults self-reported having diabetes or high sugar levels in 2018–19. After adjusting for age this was 2.8 times the rate of non‑Indigenous adults
of Indigenous adults who reported having diabetes had their blood glucose checked in the last 12 months, in 2018–19
of deaths of Indigenous Australians were due to diabetes, 5 times that of non‑Indigenous Australians, in the period 2014–2018
Why is it important?
Diabetes is a long-term chronic condition in which blood glucose levels become too high because the body produces little or no insulin, or cannot use insulin properly. Over many years, high blood glucose levels can damage various parts of the body, especially the heart and blood vessels, eyes, kidneys and nerves, and can result in permanent disability (such as blindness and lower limb amputations), mental health problems, reduced quality of life and premature death (AIHW 2015; Burrow & Ride 2016). Aboriginal and Torres Strait Islander people have a higher rate of diabetes as well as a higher of hospitalisation and death from diabetes than non-Indigenous Australians.
There are three main types of diabetes:
- Type 2 diabetes—affecting almost 1 million Australians (4.1% of the population) in 2017–18 (ABS 2018). Type 2 diabetes is a significant contributor to morbidity and mortality for Indigenous Australians. It is largely preventable and associated with lifestyle factors including physical inactivity, poor diet, being overweight or obese, excessive alcohol consumption and tobacco smoking (AIHWa). Heredity, low birthweight and intra-uterine factors are also associated with increased risk (Burrow & Ride 2016). Type 2 diabetes is a progressive condition, it may be initially managed with diet, exercise and lifestyle changes but as the disease progresses medications may be required including taking insulin in order to manage blood glucose levels (Diabetes Australia 2020a).
- Type 1 diabetes—affecting almost 145,000 Australians (0.6% of the population) in 2017–18 (ABS 2018). Type 1 diabetes is a lifelong autoimmune disease that usually has an onset in childhood or early adolescence and requires management with insulin to ensure that blood glucose levels remain within a safe range. It is not known what causes the autoimmune reaction that initiates type 1 diabetes. Type 1 diabetes is not linked to modifiable risk factors and it is not known how to prevent it (Diabetes Australia 2020b).
- Gestational diabetes—around one in six Australian females aged 15–49 who gave birth in hospital were diagnosed with gestational diabetes in 2017–18 (AIHWa 2020; Diabetes Australia 2020b)The fastest growing type of diabetes in Australia, gestational diabetes occurs during pregnancy and is usually resolved after the baby is born (Diabetes Australia 2020c). Gestational diabetes can be managed with a healthy diet and regular exercise, however in some instances women may require medication and/or insulin injections (Diabetes Australia 2020c). High blood glucose levels can cause complications for both the mother and baby during pregnancy, and gestational diabetes also increases the risk of developing type 2 diabetes for the mother.
Diabetes is a major public health problem worldwide, with global estimates indicating that the disease affects 415 million people and is increasing rapidly (Al-Lawati 2017). In 2013, 1 in 12 of global all-cause deaths were attributable to diabetes in adults (Group 2015). Diabetes lowers quality of life, increases medical expenses and significantly increases disease-related deaths (Shi 2016).
Burden of disease
Key risk factors for diabetes for Indigenous Australians:
- 62% of burden is due to high body mass
- 36% of burden is due to physical inactivity
In 2011, diabetes accounted for 4% of the Indigenous burden of disease, 8% of the health gap between Indigenous and non‑Indigenous females, and 7% of the gap for males. Diabetes burden was mostly (68%) due to early death and was the second leading contributor to the burden for Indigenous Australians aged 45–64. Between 2003 and 2011, there was a 20% increase in the non-fatal burden, from 4 years lived with disability (YLD) per 1,000 to 5 YLD per 1,000 in 2011. However, there was a decrease in the rate of fatal burden from 20 years of life lost (YLL) per 1,000 in 2003 to 17 YLL per 1,000 in 2011—a 15% decrease. The disease burden for Indigenous Australians due to diabetes was greater in Remote areas and for those living in poor socioeconomic areas (AIHW 2016).
What does the data tell us?
In the period 2014–2018, 8% (1,099) of deaths of Indigenous Australians were due to diabetes and the rates were 5 times those of non‑Indigenous Australians (77 per 100,000 compared with 16 per 100,000), after adjusting for differences in the age structure between the two populations. Diabetes was the second leading cause of the gap in death rates between Indigenous and non‑Indigenous Australians (17% of the total gap in death rates), after circulatory diseases (21% of the total gap in death rates). These data are for the five jurisdictions with Indigenous identification data of adequate quality (New South Wales, Queensland, Western Australia, South Australia and the Northern Territory) (Table D1.23.1).
Figure 1.09.1: Age-standardised mortality rates for diabetes, by Indigenous status, NSW, Qld, WA, SA and NT, 1998–2018
Diabetes does not often lead directly to death, so associated complications are often listed as the cause of death (AIHW 2017). In 2014–2018, there were 2,861 deaths of Indigenous Australians in which diabetes was listed as an associated cause of death. This was 19% of the total deaths of Indigenous Australians (Table D1.23.24).
Hospitalisation for diabetes
Between July 2015 and June 2017, 6,504 Indigenous Australians were hospitalised for diabetes. This was 3.6 times the rate of non-Indigenous Australians (6.1 and 1.7 per 1,000 respectively), after adjusting for differences in the age structure between the two populations (Table D1.09.8).
Indigenous Australians were most likely to be hospitalised for type 2 diabetes (61%), followed by type 1 diabetes (24%) and gestational diabetes (14%) (Table D1.09.10).
Indigenous males aged 35–44 were 5.7 times as likely as non-Indigenous males of the same age to be hospitalised for diabetes (6.3 and 1.1 per 1,000 respectively). Indigenous females aged 45–54 were 7.3 times as likely as non-Indigenous females of the same age to be hospitalised for diabetes (8.2 and 1.1 per 1,000 respectively) (Table D1.09.7, Figure 1.09.2).
Figure 1.09.2: Age-specific hospitalisation rates for a principal diagnosis of diabetes, by Indigenous status and age, Australia, July 2015 to June 2017
The rate of hospitalisation for diabetes was highest for Indigenous Australians living in Very Remote areas (9.3 per 1,000) and lowest in Inner Regional areas (4.2 per 1,000) (Table D1.09.9, Figure 1.09.3). The rate also varied by jurisdiction, it was the lowest in Tasmania (2.7 per 1,000) and highest in Western Australia (8.8 per 1,000) (Table D1.09.8).
Complications of diabetes such as lower limb amputations were also more common among Indigenous Australians than non-Indigenous Australians. A retrospective 2011–2013 analysis of those attending the High Risk Foot Clinic at the Townsville Hospital found that lower limb amputation was occurred more commonly among Indigenous Australians (57%) compared with non-Indigenous Australians (29%), and that Indigenous status was associated as a risk factor for this outcome (OR 3.4) (Burrow & Ride 2016; Rodrigues et al. 2016).
Figure 1.09.3: Age-standardised hospitalisations for diabetes, by Indigenous status and remoteness, Australia, July 2015 to June 2017
In 2016–17, 62,413 Indigenous Australians were hospitalised with diabetes as a principal or additional diagnosis (this included hospitalisations with multiple causes and diabetes was not the main diagnosis). After adjusting for differences in the age structure of the two populations, Indigenous Australians were hospitalised for diabetes as a principal or additional diagnosis at 3.8 times the rate of non-Indigenous Australians (140 per 100,000 compared with 37 per 100,000) (Table D1.09.12).
The Bettering the Evaluation and Care of Health Survey data (2010–15) showed that 5.5% of all problems managed by general practitioners (GPs) for Indigenous patients were for diabetes. Type 2 diabetes accounted for 92% of all diabetes problems managed by a GP (82 per 1,000 encounters). After adjusting for differences in the age structure between the two populations, GPs managed diabetes for Indigenous Australians at 2.9 times the rate for Other Australians (non-Indigenous Australians and those with unknown/not stated Indigenous status) (Table D1.09.6).
According to self-reported data in the 2018–19 National Aboriginal and Torres Strait Islander Health Survey (Health Survey), around 8% of Indigenous Australians had diabetes (ABS 2019). This included Indigenous Australians of all ages and has not been age-standardised. However, to better understand and capture the health risk to the Indigenous Australian population and to understand the disparity with the non-Indigenous Australian population the self-reported rates below focus on those aged 18 and over (due to low rates occurring among children) and include those with high sugar levels. The age-specific rates have not been age-standardised.
The 2018–19 Health Survey showed that 13% of Indigenous Australians aged 18 and over self-reported having diabetes or high blood/urine sugar levels (HSL). After adjusting for differences in the age structure, Indigenous Australians were 2.8 times as likely to report having diabetes or HSL as non-Indigenous Australians—17% compared with 6% respectively. Indigenous male adults reported having diabetes or HSL at a similar rate to Indigenous female adults (18% and 17%, respectively). Indigenous adults in Remote areas reported a higher rate of diabetes or HSL (24%) than those in Non-remote areas (15%). The rate of self-reported diabetes or HSL for Indigenous adults varied by jurisdiction, with the lowest in Tasmania (9%) and the highest in Western Australia (24%) (Table D1.09.2, Figure 1.09.4).
Figure 1.09.4: Age-standardised proportion of persons aged 18 and over who self-reported having diabetes or high sugar levels, by Indigenous status and jurisdiction, 2018–19
Diabetes or HSL increased with age for Indigenous adults, from 0.8% for those aged 18–24, to more than one-third of those aged 55 and over (36%) (Table D1.09.2, Figure 1.09.5).
Figure 1.09.5: Proportion of adults who self-reported having diabetes or high sugar levels, by Indigenous status and age, 2018–19
There was a significant relationship with Indigenous adults reporting diabetes or HSL and selected social determinants of health and risk factors such as educational attainment, weight, self-assessed health status, heart and circulatory problems, kidney disease and blood pressure. Indigenous adults were more likely to report having diabetes or HSL if they:
- had completed Year 9 or below (3.3 times) compared with those who had completed Year 12,
- reported having fair/poor health status (2.8 times) compared with those who reported excellent/very good/good health status,
- were obese (1.8 times) compared with those who were not obese,
- reported having heart or circulatory problems (4.2 times) compared with those who did not,
- reported having kidney disease (3.6 times) compared with those who did not,
- had measured high blood pressure (1.8 times) compared with those who did not (Table D1.09.5).
In 2018–19, the main health actions taken by Indigenous Australians reporting diabetes or HSL were:
- 92% had their blood glucose checked in the last 12 months
- 70% had taken lifestyle action relating to diet, weight loss and exercise in the last two weeks
- 73% had a blood test (HbA1c) to manage diabetes in the last 12 months
- 70% had their feet checked in the last 12 months
- 62% used medicine/tablets in the last two weeks
- 31% had been tested for diabetes/high sugar levels in the last three years
- 24% had used insulin in the last two weeks (Table D1.09.4).
Diabetes data by type and limitations
Data on Indigenous Australians with type 2 diabetes are incomplete. National data on diabetes prevalence are primarily based on self-report in ABS health surveys as described above. However, the self-reported data for the National Aboriginal and Torres Strait Islander Health Survey does not differentiate between type 1 and type 2 diabetes, and excludes gestational diabetes.
Another source of data on the incidence of diabetes by type is the National (insulin-treated) Diabetes Register (NDR). However, not all Indigenous Australians with type 2 diabetes are registered with the National Diabetes Services Scheme (NDSS), and not all are insulin dependent. The NDR draws upon the NDSS as the source population for calculating incidence rates (new cases) of insulin-treated type 2 diabetes. This means rates of type 2 diabetes for Indigenous Australians (insulin or non-insulin dependent) are underestimated from both the NDR and NDSS. This is a data gap (AIHW 2020b). Therefore, only information on the incidence of type 1 diabetes is presented below.
Type 1 diabetes
In 2018, 129 Indigenous Australians were diagnosed with type 1 diabetes (16 cases per 100,000 people). After adjusting for differences in the age structures between the two populations, the incidence rates of type 1 diabetes were similar among Indigenous Australians and non-Indigenous Australians (12 and 11 cases per 100,000 people, respectively).
The age-standardised incidence rate of type 1 diabetes among Indigenous Australians had increased from 2005 to 2018 (from being lower than the non-Indigenous rate to similar or slightly higher than the non-Indigenous rate). However, the Indigenous rates are based on small numbers and are subject to volatility (AIHW 2020b).
The primary national data sources for gestational diabetes for Indigenous women are the National Hospital Morbidity Database and the National Perinatal Data Collection (AIHW 2019).
Using hospital data, in 2016–17, after adjusting for differences in the age structure between the two populations, the incidence of gestational diabetes for Indigenous Australian women was around 1.3 times the rate for non-Indigenous women (19% compared with 15%). In 2016–17 there were over 1,600 new cases of gestational diabetes among Indigenous women aged 15–49 who gave birth. Incidence increased with age, peaking in the age group 40 and over at 32% (women in this age group were 4 times as likely to be diagnosed with gestational diabetes as Indigenous women aged 15–19 and 20–24) (AIHW 2019).
Data from the National Perinatal Data Collection in 2017 showed that, after adjusting for differences in the age structure between the two populations, 16% of Indigenous mothers who gave birth had gestational diabetes and 3% had pre-existing diabetes (compared with 13% and 1% of non-Indigenous mothers, respectively) (Table D2.21.12).
What do research and evaluations tell us?
Nationally, Indigenous Australians self-reported having diabetes or high sugar levels at a rate almost 3 times as high as non-Indigenous Australians. Research has shown that prevalence varies across regions, with studies of some individual communities having reported diabetes prevalence ranging from 3.5 to 33.1% (Burrow & Ride 2016; Minges et al. 2011; Shaw & Tanamas 2012).
The onset of diabetes occurs earlier among Indigenous Australians compared with non-Indigenous Australians, which leads to a greater burden of illness associated with the complications of diabetes, including kidney damage, loss of vision, peripheral nerve damage and peripheral vascular diseases (AIHW 2016; Shaw & Tanamas 2012). Greater disease severity, lower access to health services and increased risk factors have also contributed to increased diabetes-related complications in indigenous populations worldwide (Harris et al. 2017). Diabetes in pregnancy is also considered a key predictor and contributor to the increased prevalence of type 2 diabetes in indigenous populations globally, with an increasing prevalence of gestational diabetes among Indigenous women leading to a cycle of intergenerational risk transmission (Harris et al. 2017; Ma & Popkin 2017).
More broadly, higher rates of type 2 / pre-existing diabetes and gestational diabetes among Indigenous mothers contribute to poorer pregnancy outcomes and long term consequences for mothers and children. This can be seen among Indigenous women in countries with similar histories of colonisation such as Australia, Canada, New Zealand and the United States (Voaklander et al. 2020). Research suggests that prevention or delay of onset of type 2 diabetes in younger women is vital to improving pregnancy outcomes (Maple-Brown Louise et al. 2019). Evidence suggests that children born to women with diabetes have increased risk of youth onset chronic disease including diabetes. There may be an intergenerational effect contributing to the global epidemic of diabetes, with epigenetics potentially being a factor. The burden of diabetes facing pregnant Indigenous women is amplified by the effect of social determinants which makes it all the more important that services for diabetes care are culturally safe (Maple-Brown Louise J & Hampton 2020).
Research has been exploring the increasing rate of type 2 diabetes among Indigenous Australian children. In 2006–11, Indigenous Australian children aged 10–14 were 8 times as likely to have type 2 diabetes as non-Indigenous children (AIHW 2014). Between 1990 and 2012 in Western Australia, the mean incidence of type 2 diabetes in Indigenous children was 21 times the rate of non-Indigenous children (Haynes et al. 2016). Titmuss and colleagues (2019) highlighted that Indigenous Australian young people with type 2 diabetes also have high rates of comorbidities which will have a significant effect on the burden of disease into the future, possibly leading to renal, cardiac, neurological and ophthalmological complications (Titmuss et al. 2019). In young Indigenous Australians with type 2 diabetes, 59% also have hypertension, 24% having dyslipidaemia and 61% having obesity (Haynes et al. 2016; Titmuss et al. 2019).
The number of Indigenous Australians with diabetes is higher in remote areas and they are also at greater risk of complications, for example kidney failure (Minges et al. 2011; Shaw & Tanamas 2012). Living remotely poses barriers to accessing health care and diabetes education resources. Remoteness can be a compounding factor for Indigenous mothers with diabetes during pregnancy with a greater likelihood of poorer pregnancy outcomes (Duong et al. 2015).
The total annual cost for Australians with type 2 diabetes is estimated at $6 billion. Costs associated with diabetes include health care costs, cost of carers and government subsidies (Colagiuri et al. 2002; Shaw & Tanamas 2012). Indirect costs associated with diabetes include resources lost by individuals, such as annual lost wages, and also the present and future effect of lost opportunities due to diabetes, such as morbidity, disability and premature mortality (Shaw & Tanamas 2012). A study into the cost effectiveness of primary health care for Indigenous Australians with diabetes in remote communities in the Northern Territory found that the cost of preventing one hospitalisation for diabetes was $248 for those in the medium-use of care group (patients who used primary care 2-11 times annually) and $739 for those in the high-use group (patients who used care 12 or more times annually). This is a substantial saving compared with the average cost of one hospitalisation ($2,915) (Thomas 2014).
The Wurli Wurlinjang Diabetes Day Program, operating in Katherine since 2008, aims to improve the wellbeing of type 2 diabetes patients at Wurli Wurlinjang Health Service through a supportive environment that promotes self-management and provides comprehensive care. An evaluation of the program’s outcomes found a considerable improvement in social and emotional wellbeing, an increase in the number of people receiving medical check-ups and a small but significant improvement in clinical outcomes including control of blood sugar, blood pressure and cholesterol (Entwistle et al. 2011).
Deadly Choices is a school-based health promotion and education program in Queensland aimed at improving knowledge, attitudes, self-efficacy and behaviours of urban Indigenous young people regarding chronic disease and associated risk factors. An evaluation showed the program was successfully improved knowledge, attitudes and self-efficacy regarding chronic disease and risk factors. Significant increases were found in physical activity levels, breakfast frequency, fruit and vegetable consumption and in the uptake of Aboriginal and Torres Strait Islander Health Checks (Medicare Item 715) (Malseed et al. 2014).
Aunty Jean’s Good Health Team began as a pilot project, with the idea that the community could work together to achieve better health outcomes. The main aim of the project was to develop a combined model of health promotion, education and self-management to support the development of good health behaviours and strategies for Indigenous Australians with chronic and complex care requirements. Led by Elders, the program ran for 12 weeks in the Illawarra region of New South Wales and involved completing 12 modules and a self-managed home program activity. Evaluation of the project showed improvements in self-management, the development of appropriate and effective working partnerships, culturally acceptable and appropriate information sharing and enhanced capacity in physical activity and self-management strategies. The evaluation also indicated improved health measures such as blood pressure and blood glucose levels. Essential factors contributing to the success of the program include leadership from Elders, strong existing relationships within the community and between the community and health professionals, and the location of the program within a safe community space (Curtis et al. 2004).
Reducing the burden of disease for Indigenous Australians due to diabetes and the substantial associated public and social health costs, requires significant effort across the life course, generations and the health care continuum, beginning with preconception and pregnancy.
Policies and interventions should include a focus on primary prevention that aims to stop the development, or delay the onset, of type 2 diabetes (for example, through a healthy diet and lifestyle and physical activity) (Burrow & Ride 2016; Shaw & Tanamas 2012). Implementing strategies to achieve effective secondary prevention to stop the development of diabetes-related complications through lifestyle changes and medication is also crucial.
As there is no mechanism for preventing of type 1 diabetes, further research on finding a cure for this disease and on improved treatments is needed (Shaw & Tanamas 2012). Further research into whether type 1 diabetes incidence is increasing for Indigenous Australians, or whether the trend is more reflective of data volatility or increased detection, is also worth exploring.
Primary health care has an essential role in assessing diabetes risk, and the prevention, detection and management of diabetes. The Aboriginal and Torres Strait Islander Health Check (Medicare Item 715) is a screening tool used in primary health care to aid in the early detection of chronic diseases such as diabetes among Indigenous Australians. Through this health check patients can have their risk of developing diabetes over the next five years assessed using the Australian type 2 diabetes risk assessment tool. Patients identified as high risk can be referred to a lifestyle modification program and other appropriate prevention strategies and interventions can be recommended. However, once diagnosed, diabetes requires ongoing management in primary health care to assist patients managing blood sugar levels and other effects of the disease. Other Medicare items coordinate complex and multidisciplinary diabetes care (see measure 3.05 Chronic disease management). There are also government programs designed to improve Indigenous Australians’ access to medicines to improve compliance with medication, and reduce barriers such as the cost of the medications and access to pharmacies.
It is crucial that Indigenous Australians with diabetes have access to appropriate diabetes support, education and services and that the workforce across the health sector has the capability to deliver evidence-based diabetes care (DoH 2015). Culturally safe and competent health care is particularly important for Indigenous Australians managing a complex chronic disease such as diabetes.
The high levels of diabetes among Indigenous Australians reflect a broad range of historical, social and cultural factors. This presents specific challenges in the management and prevention of diabetes including in providing access to effective care services that are tailored to community needs and that are culturally appropriate (Burrow & Ride 2016).
The National Diabetes Services Scheme (NDSS) provides subsidised products and support services to assist people manage diabetes. However, many Indigenous Australians with diabetes have not registered with the NDSS and this hinders estimates of the number of new cases of Indigenous Australians with diabetes. Where Indigenous Australians live in remote and very remote locations, NDSS Access Points may be limited, but patients may be obtaining diabetes-related products or services through other targeted Indigenous-specific programs (AIHWb). Efforts to encourage Indigenous Australians with diabetes to register will yield benefits for patients and improve the coverage and quality of the data.
Measure 3.05 Chronic disease management, provides more information on the effectiveness of the health system in providing diabetes care, including on the need for regular monitoring of blood glucose levels for patients with diabetes. Commonwealth-funded Indigenous primary health care organisations provide national Key Performance Indicators data on a range of process of care measures including regular testing of blood glucose levels for patients with diabetes. This information assists with the continuous quality improvement of services and serves as a useful example to other primary care services about the regular and ongoing care needs of patients with diabetes.
The policy context is at Policies and strategies.
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