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DIABETES: BURDEN AND MANAGEMENT
Overview
This following chapter summarises the problem of poorly controlled diabetes and the potential of mHealth in providing a solution. Specifically, it reviews the literature on the burden of diabetes and its management. It then reviews the literature around the use of mobile phone technology for health behaviour change and disease management support, identifying how mobile phones can play a part in providing diabetes self-management support for people with poorly controlled diabetes.
The burden of diabetes
Diabetes mellitus is a chronic condition characterised by increased levels of blood glucose (hyperglycaemia), which can lead to an array of microvascular and macrovascular complications. Diabetes mellitus is categorised into different forms with the most common being type 1 diabetes and type 2 diabetes. Type 1 diabetes is an autoimmune disorder in which insulin producing beta cells in the pancreas are destroyed resulting in insulin deficiency and raised levels of glucose.(1) Diagnosis is typically during childhood although can occur at any age. The cause of type 1 diabetes, although not fully understood, is believed to be multifactorial with a number of environmental factors thought to play a part as well as genetic susceptibility.(2) To date no treatment has been found to either prevent or cure type 1 diabetes, therefore the goal is management including control of blood glucose and prevention of long term complications.
In contrast type 2 diabetes is the result of insulin resistance and deficient insulin secretion. Type 2 diabetes is the most common form, comprising over 90% of adults with diabetes internationally.(1) An unhealthy lifestyle leading to obesity, as well family history, can contribute to the development of type 2 diabetes, and the condition can go undiagnosed for years due to the gradual onset of hyperglycaemia. Insulin resistance can be improved through lifestyle modification and pharmacological treatment. Although type 1 and type 2 diabetes are heterogeneous diseases with considerable variation in clinical presentation and disease progression, both are characterised by progressive loss of β-cell mass/function manifesting clinically as hypoglycaemia. Once hypoglycaemia occurs people across both types are at risk of developing the same complications.(3)
When a person’s blood glucose levels are consistently high it can lead to serious damage to key organs including the kidneys, heart, eyes, blood vessels, and nerves.(1) The leading cause of mortality and morbidity in people with diabetes is cardiovascular disease including stroke, myocardial infarction, peripheral artery disease, angina, and congestive heart failure.(4) Cardiovascular disease is also the largest contributor to healthcare costs associated with diabetes. Individuals with diabetes are also at increased risk for the development of diabetic retinopathy leading to vision problems and blindness, as well as kidney disease (nephropathy). Nerve damage leading to peripheral neuropathy is also a common complication of diabetes resulting in pain, loss of sensation and in severe cases amputation.(5) Diabetes complications can be prevented or delayed with good blood glucose control, and screening allows for early detection and treatment to halt or slow their progression. The Diabetes Control and Complications Trial (DCCT),(6, 7) the Epidemiology of Diabetes Interventions and Complications (EDIC) observational follow-up study,(8) and the UK Prospective Diabetes Study,(9) contribute to substantial evidence that good control of diabetes translates into significant reduction to the risk of diabetic complications. Prevention of diabetic complications by better glycaemic control is not only advantageous for the person’s quality of life but will substantially decrease healthcare costs associated with treating or managing the complications.(5, 10-13)
In 2012 the national cost of diabetes in the United States (US) was nearly $250 billion, with approximately three quarters of this cost attributable to direct health care expenditure and the remaining representing the loss of productivity resulting from absenteeism in the workplace and unemployment due to disability or premature mortality.(14) In the US, it has been estimated that medical care associated with people with diabetes accounts for one fifth of all healthcare costs, highlighting the substantial burden of the condition on healthcare systems.(14)
The growing prevalence of diabetes is considered to be one of the biggest global health issues facing society. It is estimated that there are over 400 million adults currently living with diabetes around the world and an additional 300 million are at risk for developing diabetes.(15) The New Zealand Health Survey annual update of key results for 2015/16 reported the prevalence of diabetes in adults (aged 15 years and over) as 5.8% (95% CI: 5.4 – 6.2) – estimating that 217,000 (95%CI; 201,000-234,000) New Zealand adults live with diabetes.(16) In New Zealand a higher prevalence is seen in Pacific and Māori (indigenous) ethnic groups, and those living in most deprived areas.(16, 17) Approximately 29% of people with diabetes in New Zealand (including 43% of Māori and 50% of Pacific people with diabetes) have HbA1c levels indicative of poor control (≥65mmol/mol) putting them at risk for the development of complications.(18) Ethnic minorities are particularly vulnerable to the development of diabetes, typically develop the condition earlier, and experience poorer control and increased rates of complications.(19-23) Factors such as language barriers, cultural practices and beliefs, knowledge of diabetes, beliefs about medication, and inaccurate illness perceptions may be contributing factors.(24-26) There is considerable evidence that poorer health outcomes are seen in vulnerable populations such as ethnic minorities as well as people living rurally, elderly populations, those of lower socioeconomic status and those with lower education.(27) Addressing these health disparities is a priority in the care of people with diabetes. Services need to meet the needs of vulnerable groups such as Māori and Pacific while addressing the barriers contributing to these disparities. Interventions need to be culturally appropriate and provide education on how to access care and support, as well as increase the person’s ability to participate in the management of their health.
Diabetes management
Stabilising blood glucose levels or achieving good glycaemic control is the primary goal of diabetes management. Glycosylated haemoglobin (HbA1c) is the most commonly used measure of control in individuals with diabetes. It measures average blood glucose levels over several months with the target for individuals with diabetes being <53mmol/mol (<7%) indicating good control of the condition.(28). To achieve good control, significant engagement from patients and healthcare providers is needed with diabetes being one of the most demanding chronic conditions both behaviourally and psychologically. In contrast to many other chronic conditions, treatment of diabetes is largely carried out through self-care, with one estimate suggesting that 95% of diabetes care is provided by the patient and/or their family.(29) Healthcare professionals provide the patient with the knowledge, guidance and treatments but the patients must then translate this into self-management of their condition in their everyday lives. Juggling the demands of diabetes self-management with the demands of work and family can be particularly challenging compounded by factors such as motivation, language barriers, health literacy, socio-economic status, and beliefs resulting in poor compliance for many people.
Successful diabetes management involves managing medical responsibilities including blood glucose monitoring, medication adherence, and insulin administration alongside engaging in health behaviours around diet and physical activity. There are a wide range of interventions designed to support people with diabetes to self-manage; from passive interventions (e.g. provision of information) to more active interventions (e.g. interventions to change behaviour).(30) Supporting a person’s self-management of their condition involves providing encouragement, information and support to help that person obtain greater control of their condition. This may be done by increasing their understanding of their condition, encouraging them to be active participants in the decision making around their condition and motivating them to engage in healthy behaviours such as blood glucose monitoring, healthy eating and physical activity.
Providing a person with information around successful diabetes management alone is rarely adequate to improve their diabetes management behaviours and outcomes.(31) A person’s beliefs about their diabetes, their motivations, as well as how they feel about their condition is known to have a big impact on their engagement with self-management. Psychological theories and models provide frameworks for understanding the factors contributing to a person’s engagement in health behaviours. The concept of self-efficacy (a person’s situational confidence in their ability to perform a specific behaviour), a construct of the Social Cognitive Theory, is considered fundamental to a person carrying out self-care behaviours.(32) People demonstrating high levels of self-efficacy have been shown to be better able to manage their diabetes and engage in self-management behaviours,(33) with this relationship seen across diverse ethnicities and levels of health literacy.(34) Social Cognitive Theory offers a theoretical framework to understand the relationship between self-efficacy and diabetes self-care behaviours.(33) When self-management interventions aim to target the sources of self-efficacy through techniques such as modelling, skills mastery and social persuasion, they increase the participant’s confidence in their ability to self-manage their diabetes and therefore make successful engagement in self-management behaviours more likely. Another model that has influenced diabetes self-management interventions includes the Common Sense Model (or Self-Regulation Model).(35) This model proposes that a person’s illness perceptions and emotional representations are drivers for their coping strategies and their self-management behaviours. Self-management interventions can support people to form accurate and constructive illness perceptions and coping strategies which in turn can increase their likelihood of engaging in diabetes self-management.
Providing education about diabetes and how to effectively manage it, including information about blood glucose monitoring, diet and exercise, is an essential component in supporting a person to manage their diabetes. Internationally, self-management education is acknowledged as a crucial component of diabetes care. In New Zealand the Quality Standards for Diabetes Care state that “People with diabetes should receive high quality structured self-management education that is tailored to their individual and cultural needs”.(36) This can be provided individually or through group programmes such as Diabetes Self-Management Education (DSME) Programmes. DSME aims to target key diabetes self-care behaviours including physical activity, eating, medication taking, blood glucose monitoring, problem solving, reducing the risks of complications, and psychosocial adaptation to diabetes.(37) DSME programmes have been shown to improve diabetes self-management behaviours, clinical outcomes, quality of life, and health service use, but ongoing support appears key for benefits associated with DSME to be sustained long term.(38-40) Ongoing self-management support following DSME programmes is not always feasible due to limited resources and clinician time. There is currently no superior approach to the delivery of diabetes self-management education but it is recommended that programmes be tailored, culturally appropriate, flexible, and theoretically based.(41) In New Zealand there are a range of self-management programmes delivered to people with diabetes, which are typically delivered in group environments through secondary care, primary care or community organisations, but these vary considerably across the country resulting in inconsistent access and support.(42) Although the majority of people with diabetes in New Zealand will have the opportunity to attend formal diabetes education, it is estimated that only approximately 5-10% of people with diabetes attend structured diabetes self-management programmes.(43, 44)
Mobile phones as a tool for behaviour change and disease management
Mobiles phones are ubiquitous worldwide with 95% of the global population residing in areas covered by mobile networks.(45) In New Zealand there are more mobile phone connections than people – 121 active mobile connections per 100 population in 2015.(46) Smartphone (mobile phone with a computer operating system) ownership is continuing to increase with approximately 70% of New Zealand adults reporting smartphone ownership although rates vary across population groups (from 91% of those aged 18-34 to 45% of those aged 55+; and from 57% of those earning less than $40,000 per year to 83% of those earning more than $90,000 per year).(47) Over 90% of smartphone owners report using their device daily and use of these devices is increasing each year.(47) Although smartphone ownership is increasing, and with it the use of mobile-internet related activities, SMS volumes have remained steady with around 12 million SMS messages sent in New Zealand per year.(46) Pay-as-you-go (Prepay) remains the dominant mobile phone subscription type for New Zealand consumers over contract based plans.(46) Due to the pervasiveness of mobile phones and high integration into our daily lives, this platform appears ideal for the delivery of health interventions..
CHAPTER 1 THESIS INTRODUCTION
1.1. Thesis aim and objectives
1.2. Thesis structure
CHAPTER 2 DIABETES: BURDEN AND MANAGEMENT
2.1. Overview
2.2. The burden of diabetes
2.3. Diabetes management
2.4. Mobile phones as a tool for behaviour change and disease management
2.5. Summary
CHAPTER 3 THE EFFECTIVENESS OF TEXT MESSAGE-BASED SELF-MANAGEMENT INTERVENTIONS FOR POORLY-CONTROLLED DIABETES: A SYSTEMATIC REVIEW.
3.1. Preface to the publication
3.2. Abstract
3.3. Introduction
3.4. Methods
3.5. Results
3.6. Discussion
3.7. Conclusions
3.8. Declarations
CHAPTER 4 THE USE OF MOBILE HEALTH TO DELIVER SELF-MANAGEMENT SUPPORT TO YOUNG PEOPLE WITH TYPE 1 DIABETES: A CROSS-SECTIONAL SURVEY
4.1. Preface to the publication
4.2. Abstract
4.3. Introduction
4.4. Methods
4.5. Results
4.6. Discussion
4.7. Acknowledgments
4.8. Conflicts of interest
CHAPTER 5. DEVELOPMENT OF AN MHEALTH DELIVERED DIABETES SELF-MANAGEMENT INTERVENTION
5.1. Preface to the chapter
5.2. Background
5.3. Conceptualisation and formative work
5.4. Intervention development
5.5. Pre-testing
5.6. Summary
CHAPTER 6 DIABETES TEXT-MESSAGE SELF-MANAGEMENT SUPPORT PROGRAMME (SMS4BG): A PILOT STUDY
6.1. Preface to the chapter and publication
6.2. Abstract
6.3. Introduction
6.4. Methods
6.5. Results
6.6. Discussio
6.10. Feedback from key stakeholder groups
CHAPTER 7 TEXT MESSAGE-BASED DIABETES SELF-MANAGEMENT SUPPORT (SMS4BG): STUDY PROTOCOL FOR A RANDOMISED CONTROLLED TRIAL.
7.1. Preface to the chapter and publication
7.2. Abstract
7.3. Background
7.4. Methods/design
7.5. Discussion
CHAPTER 8 A RANDOMISED CONTROLLED TRIAL OF A TEXT MESSAGE-BASED DIABETES SELF-MANAGEMENT SUPPORT PROGRAMME (SMS4BG)
8.1. Preface to the chapter and publication.
8.2. Abstract
8.3. Background
8.4. Methods
8.5. Results
8.7. Declaration of interests
CHAPTER 9 DISCUSSION
9.1. Overview of the thesis findings
9.2. Strengths of the research
9.3. Limitations of the research
9.4. Implications
9.5. Conclusions
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