Diabetes among young Australians
Young people face many physical, social and psychological changes as they mature and begin to take responsibility for their own health. This experience can be particularly challenging for a young person with a chronic disease like diabetes.
Diabetes among young Australians is the first report from the National Centre for Monitoring Diabetes, based at the AIHW, to explore the experiences of young people (aged 0 to 30) living with diabetes. It shows how young people are managing the condition, their use of health services and the diabetes-related health problems they face.
How many young people have diabetes?
Diabetes affects a considerable number of young people. In 2010, there were about 31,300 people aged 0–30 with diabetes in Australia. Most had Type 1 diabetes (79%), while the remainder (21%) had Type 2 diabetes. Estimates on the number of young people with diabetes come from registrations with the National Diabetes Service Scheme (NDSS). The NDSS is an Australian government program that provides access to subsidised products such as syringes, needles, consumables for insulin infusion pumps, and blood and urine testing strips for people with diabetes.
What is diabetes?
Diabetes mellitus (diabetes) is a chronic condition marked by high levels of glucose (sugar) in the blood. The condition is caused by the inability to produce insulin (a hormone produced by the pancreas which controls blood glucose levels), or the body cannot use insulin effectively, or both (World Health Organization 2006).
Type 1 diabetes is an auto-immune condition that usually first manifests in children or young people, although it can start at any age. It is marked by the inability to produce any insulin and those affected need insulin replacement for survival. Across all ages it accounts for only about 10% of all diabetes cases, but in children and young adults Type 1 diabetes is the more common form.
Type 2 diabetes is the more common form of diabetes overall, and across all age groups it accounts for about 85% to 90% of cases. It is most common in people aged 50 and over, and is uncommon in young adults, although it may be increasing in this population. People with Type 2 diabetes produce insulin but may not produce enough of it, or cannot use it effectively.
How do young people manage their diabetes?
Insulin pumps
People with Type 1 diabetes require intensive treatment with insulin, a hormone that controls glucose levels in the blood. Treatment is highly individualised and needs to take into account factors such as body weight, food intake and exercise. Self-monitoring of glucose levels, achieved with a blood glucose monitoring device and blood glucose test strips, is an essential part of diabetes management.
The report shows that young people aged 0–11 are the highest users of products such as blood glucose test strips, urine testing strips, needles and insulin reservoirs.
'The higher level of blood glucose monitoring in this age group may be attributed to the high level of parental involvement in the child's diabetes care at this age', said report co-author Susana Senes.
'This involvement drops as the person aged 12–18 manages this task more and spends an increasing amount of time away from the family's direct care.'
People aged 19–24 were the lowest purchasers of blood glucose test strips, but they bought other products such as needles, reservoirs and urine test strips at a similar rate to people aged 25–30.
'Of concern is the finding that people aged 19–24 bought blood glucose test strips at lower rates than other age groups, which suggests they are not managing their diabetes as well as others', Ms Senes also observed.
Use of insulin pumps, a method of continuous insulin delivery used as an alternative to multiple daily injections, was also more common among people aged 18 and under.
'Possible reasons for this are the subsidies available
for eligible people under 18 to buy a pump, ease of use at school and greater availability of staff resources for initiating pump therapy in paediatric centres',
Ms Senes said.
Use of health care services
Younger people with Type 1 diabetes are typically supported in their management of the disease by a multi-disciplinary team based in a diabetes centre.
Diabetes centres are specialist centres that bring together a range of health care providers to care for people with diabetes.
Research has shown that young people with diabetes who attend a diabetes centre have better health outcomes than young people who only visit a GP or who receive no health care at all.
Increased rates of diabetes-related morbidity, poorer wellbeing and the earlier onset of diabetes-related complications have been consistently observed in young people who do not attend diabetes centres.
Hospital admissions
For young people with Type 1 diabetes, hospital care is often needed at the time of diagnosis and the commencement of insulin pump therapy.
For all types of diabetes, admission to hospital may also be needed during episodes of acute complications such as ketoacidosis (a condition caused by insufficient insulin that is characterised by very high blood glucose levels) and hypoglycaemia (low blood glucose).
Children aged 0–11 with diabetes had the highest rate of presentations to emergency departments. However, when young people aged 12–18 and 19–24 did present to emergency, a greater proportion needed more urgent medical attention than was observed in other age groups.
People under 25 were hospitalised more often than those aged 25–30 for acute diabetes-related complications, such as ketoacidosis.
'The number of hospitalisations for ketoacidosis among people aged 0–24 increased over the period 2002–03 to 2009–10. These hospitalisations were associated with the presence of acute illnesses and a history of non-compliance with medical treatment, especially among people aged 12–24', Ms Senes said.
Complications of diabetes and mortality
Diabetes is associated with a range of potential complications. 'Of real concern is that some serious but preventable long-term complications of diabetes are already evident in some people aged 19–30, including nerve damage, foot ulcers, eye and kidney disease', Ms Senes said.
Mortality data provides another insight into the health experiences of young people with diabetes.
Diabetes was the underlying cause of death of
88 people aged 0–30, and an associated cause of death for a further 76 in 2001–07.
'The number of deaths increased with age, and more than half (53%) occurred in the 25–30 age group.
This finding is supported by research in England into the mortality of people with diabetes aged 0–40, which found that most of the observed deaths (88%) occurred between the ages of 20 and 39', Ms Senes said.
'In our study, many of the deaths where diabetes was the underlying cause of death were related to either diseases associated with diabetes (cardiovascular- or kidney-related) or to misadventure.'
The healthcare transition
Young people with diabetes can have difficulty making the transition from paediatric to adult diabetes centres, and can experience poor health outcomes as a result.
'The management of diabetes is a complex task. To develop good habits of self-care, expert knowledge and much support is required', Ms Senes said.
'For children, this support is provided by their parents or carers, as well as staff at paediatric diabetes centres. As they grow older people have to learn how to manage the disease for themselves and to develop their own habits of self-care.'
This change in approach as children become adults is underlined by the many differences in culture between paediatric and adult health care settings.
'The major difference between the two settings is in the expected roles of the patient. In the paediatric system the patient is more likely to be part of a family team, whereas in the adult setting the patient is expected to be informed and autonomous', Ms Senes said.
A recent survey of Australian diabetes centres showed that 1 in 5 people with diabetes aged
19–24 attended a paediatric clinic, but all people in the 25–30 age group were attending adult clinics.
A survey conducted by Diabetes Australia of young people with diabetes found that the major barriers to care for young adults were long waiting lists to see a specialist or general practitioner of their choice, getting time off work or study to attend an appointment, lack of transport, and the cost of care.
'The consequences of non-attendance can be serious, and several transition programs have been established to increase engagement of young adults with the health care system', Ms Senes said.
Risks of non-engagement include acute morbidity requiring hospitalisation, and earlier onset of chronic complications such as loss of eye-sight, reduced kidney function, and peripheral nerve damage.
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