Diabetes is a common and progressive long-term condition, which places a significant burden of self-management on the individual. The prevalence of all types of diabetes is increasing, with type 2 diabetes growing at epidemic proportions [1
]. The total number of people with diabetes worldwide was conservatively estimated to increase from 171 million in 2000 to 366 million in 2030 [2
Self-management of diabetes (in all its forms) is a complex behavioural and social process, requiring not only a comprehensive understanding of the condition but also high levels of self-efficacy, perceived control and empowerment [3
]. Unsurprisingly, having diabetes can negatively impact the quality of life of people living with the condition [4
]. A considerable number of studies have found relatively high levels of distress, and, in a substantial minority, significant depressive symptomatology [6
]. Furthermore, the onset of complications (such as retinopathy, neuropathy, kidney damage, heart disease and stroke) can exacerbate the psychological impact of this progressive condition [7
]. Thus, the association between diabetes and psychological burden appears to be a vicious cycle and we need to identify ways to reduce this burden. In addition to understanding the psychological health and well-being of people with diabetes, research is needed to establish a greater understanding of perceptions and misconceptions among people with diabetes, their health beliefs and the personal values which inform their self-management.
Such research has been concentrated for the most part in the US and Europe, with very little being conducted in Australia. The Diabetes Attitudes Wishes and Needs (DAWN) Study is probably the only large-scale study that has focused on the psychological impact of diabetes and the implications for improvements to health care for people with diabetes [8
]. This cross-national study, which included an Australian sample, highlighted the importance of a positive and collaborative relationship between health care providers and people with diabetes [9
], as well as the relatively high prevalence of diabetes-related distress amongst people with diabetes [10
], and the role of psychological and social barriers to self-care and medication initiation and management [11
]. The DAWN Study highlighted important avenues for future research into the psychological aspects of living with diabetes that need to be pursued in Australia. DAWN 2, a related study with increased breadth, is currently underway but Australia is not included in this new initiative.
The Living With Diabetes Study is a population-based cohort study of the quality of life and well-being of people with diabetes living in Queensland, Australia [13
]. One of the primary aims of this study is to evaluate a state-based strategy for the management of chronic conditions, and thus the Living With Diabetes Study has been undertaken in one Australian state only.
The Diabetes MILES Study has been established as an international collaborative, the aim of which is to conduct a series of national surveys of people with type 1 or type 2 diabetes in various countries. Diabetes MILES--Australia is the first Diabetes MILES initiative, and was conceived to provide a national survey of the psychological health, self-care beliefs and activities, and unmet needs of Australians living with type 1 or type 2 diabetes. The Diabetes MILES--Australia 2011 survey was built on four central themes: management, impact, empowerment, and success.
The burden of the management of diabetes falls largely to the individual living with the condition. Self-management, or self-care, activities are crucial for achieving and maintaining optimal blood glucose levels, and preventing diabetes-related complications. Self-care is defined as 'activities that individuals, families and communities undertake with the intention of enhancing health, preventing disease, limiting illness and restoring health. They are undertaken by lay people on their own behalf, either separately or in participative collaboration with health professionals' [14
]. Diabetes self-care can involve dietary modifications, taking medications as recommended, regular physical activity, foot care and self-monitoring of blood glucose.
Self-care requires not only a comprehensive understanding of diabetes but also belief in one's capabilities, motivation to perform complex self-care activities, and a supportive environment (of family, friends and health care professionals). Self-care is central to both the experience of living with diabetes and the optimisation of diabetes outcomes, and thus ongoing research in this area is essential.
International reviews have found clinical levels of depression in up to 12% of people with type 1 diabetes and 18% of people with type 2 [15
]. Many more are likely to report some level of diabetes-related distress [6
] and, on average, diabetes has a negative impact on quality of life [5
]. Understanding the psychological, emotional, and social impact of diabetes is essential for the development and evaluation of new therapies and interventions, including but not limited to psychological therapies. For example, identifying the negative impact of diabetes on dietary freedom [5
] was instrumental in hypothesising that the Dose Adjustment For Normal Eating (DAFNE) program [17
] would offer substantial benefits for quality of life, benefits which have been well-maintained for up to four years in combination with partially maintained improvements in glycaemic levels [18
]. We need to advance our understanding of the psychological, emotional, and social impact of diabetes so that care and support for people living with the condition can be optimised.
A person with diabetes who is empowered has high perceived self-efficacy, is actively engaged in their own health care (including self-care), and seeks out necessary support and information. Empowerment is undoubtedly philosophically desirable, and importantly, evidence suggests that it is the only way to achieve optimal, sustainable long-term outcomes [19
]. Unfortunately, it can be rare in everyday clinical practice, where both the health care professional and person with diabetes often adopt traditional roles, which can result in the person with diabetes becoming a passive recipient of health care and feeling de-motivated. Access to diabetes education and utilisation of healthcare resources are examples of the means through which people with diabetes can be empowered to best manage their condition, and both are critical in achieving optimal biomedical outcomes in diabetes. Education and support programs are known to enhance self-management and improve psychosocial outcomes but are not widely available. Figures from the UK national diabetes audit [20
] indicate that a large proportion of people with diabetes are not undergoing the regular checks recommended for careful monitoring of their condition. It is important to understand the role of empowerment in successful diabetes management and utilisation of services, and to subsequently promote and facilitate patient empowerment in health care and other settings.
In addition to understanding the psychological health and well-being of Australians with diabetes, research is needed to develop a greater understanding of the role of health beliefs, and the personal values which inform self-management and willingness to engage with treatments as recommended by health care professionals. Health beliefs (e.g. perceived severity of disease, perceived efficacy of treatment) and aspects of positive mental health (such as resilience, self-esteem, optimism) are important mediators of diabetes outcomes [21
]. Hardiness, is associated with lower distress; low rates of complications and is a good predictor of optimal outcomes, independent of education [22
]. Social and peer support is also implicated in better outcomes [24
]. It is important to further examine the role of a person's disposition, and their social context, in contributing to living successfully with diabetes [26
The primary aims of Diabetes MILES--Australia are to:
• conduct a large-scale survey of Australian adults with type 1 or type 2 diabetes with a focus on exploring the psychological, behavioural and social factors relevant to living with diabetes
• ensure the suitability of the survey as the baseline for a longitudinal (repeated cross-sectional and cohort) study
• use the results to raise awareness of the psychological health and unmet needs of Australian adults living with diabetes.
Primary research questions to be addressed by Diabetes MILES--Australia include (but are not limited to):
• What characterises living successfully with diabetes? (e.g. long diabetes duration with minimal physical complications and optimal psychological health)
• What is the prevalence of impaired awareness of hypoglycaemia and severe hypoglycaemia among people with type 1 diabetes?
• What are unmet needs of Australian adults living with diabetes?
• What is the impact of diabetes on the well-being of Australians living with the condition?
• Is the Quality of Life Questionnaire--Diabetes [27
] a valid and reliable measure of the impact of diabetes on quality of life?
• Is the Diabetes Self-Care Inventory--Revised a valid and reliable measure of self-care beliefs, attitudes, and behaviours?
• Are postal and internet-based surveys equally suitable methods for conducting a national survey?
• How do two measures of diabetes-related distress (the Diabetes Distress Scale (DDS)[28
] and the Problem Areas In Diabetes questionnaire (PAID)[29
]) compare in terms of psychometric properties and utility?
• What is the prevalence of clinically significant depression, anxiety and diabetes-related distress in Australian adults living with diabetes?