NEW ZEALAND HEALTH S TRATEGY DHB TOOLKIT Diabetes To reduce the incidence and impact of diabetes 2003 Edition 1: October 2001 Updated December 2003 Contents Contents .......................................................................................................................... 2 Executive summary ......................................................................................................... 3 Summary of action points............................................................................................. 3 Development of this toolkit ............................................................................................... 6 Scope of the diabetes toolkit ........................................................................................ 6 Linkages ...................................................................................................................... 6 Introduction ...................................................................................................................... 8 What is diabetes? ........................................................................................................ 8 Burden of disease ........................................................................................................ 9 Control and treatment of diabetes .............................................................................. 10 The role of DHBs ....................................................................................................... 10 Strategic direction – disease management approach .................................................... 12 Reducing the incidence of type 2 diabetes .................................................................... 14 Community-based primary prevention in New Zealand .............................................. 14 Screening for type 2 diabetes .................................................................................... 15 Reducing the impact of diabetes .................................................................................... 17 National framework for diabetes services .................................................................. 17 Management and planning......................................................................................... 19 Primary care – free annual check............................................................................... 21 Diabetes education and self-management ................................................................. 22 Guidelines and reviews of evidence ........................................................................... 25 Hospital and other specialist diabetes services .......................................................... 25 Type 1 diabetes in children and young people ............................................................... 26 Guidelines and reviews of evidence ........................................................................... 26 The impacts of diabetes on body systems ..................................................................... 27 The impact of diabetes on the cardiovascular system ................................................ 27 The impact of diabetes on the eyes ........................................................................... 28 The impact of diabetes on the feet ............................................................................. 29 Modelling and quality assurance .................................................................................... 30 Modelling diabetes ..................................................................................................... 30 Evaluating the quality and performance of diabetes services ..................................... 30 APPENDIX 1: ............................................................................................................. 33 References .................................................................................................................... 36 New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 2 Executive summary Diabetes presents a serious health challenge for New Zealand. It is a significant cause of ill health and premature death. Reducing the incidence and impact of diabetes is therefore one of the 13 immediate action priority objectives for population health in the New Zealand Health Strategy. This toolkit provides information and resources to assist District Health Boards (DHBs) and Primary Health Organisations (PHOs) to work toward that objective. Diabetes affects about 200,000 people in New Zealand but only half of these people have been diagnosed. The prevalence of diabetes across the population of New Zealand is currently estimated at around 4 percent. Within the New Zealand population, the prevalence of diabetes in Maori and Pacific populations is around three times higher than among other New Zealanders. Diabetes is defined by abnormalities in the regulation of blood glucose levels, but it is a chronic condition causing kidney failure, eye disease, foot ulceration and a higher risk of heart disease. Although there are other types of diabetes, the scope of this toolkit is restricted to type 1 and type 2 diabetes: Type 1 is an autoimmune condition that typically develops in children and young adults and absolutely requires insulin Type 2 typically develops in middle or older ages but it is increasingly seen in overweight children. Depending on the stage of development it is treated with a combination of drugs and diet, although insulin may also be required. Type 1 has the greatest impact on an individual and their family/whanau and is not preventable. Type 2, representing about 90 percent of people with diabetes, is doubling every 15 years as a result of the ageing population, increasing obesity and physical inactivity. Type 2 is substantially preventable with lifestyle changes. Primary prevention programmes aimed at reducing the risk factors for type 2 diabetes (ie, reducing obesity and increasing physical activity) could have major benefits in reducing the future impacts of type 2 diabetes. However, with little international evidence of primary prevention programmes that have been effective, further research is required to develop effective programme models. The National Diabetes Research Strategy, jointly funded by the Ministry of Health and the Health Research Council, has funded research to develop and test communitybased programmes for preventing diabetes in high-risk people. Once diabetes has been diagnosed, effective management, including treatment, education and support, is required to maintain health and prevent the development of diabetes-related complications. This toolkit cannot over emphasise the value of teamwork and collaboration between health professionals, people with diabetes, local organisations and national agencies to ensure that intersecting services work together for people with diabetes. To improve the quality and effectiveness of treatment, services should work together to intervene earlier, intervene more effectively and increase the uptake of interventions. Services must be structured and well coordinated, with effective information flows between care providers. Summary of action points General The Ministry of Health will implement the Healthy Eating-Healthy Action strategy to improve nutrition, increase physical activity and reduce obesity. District Health Boards should implement the 2003 updated evidence based guideline Management of Type 2 Diabetes (available from the NZGG website, www.nzgg.org.nz). New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 3 • District Health Boards should develop a disease management approach to diabetes through multidisciplinary services that have the information and knowledge to drive continuous quality improvement at every stage in diabetes management. • District Health Boards and PHOs should use the “Get Checked” data to monitor the number of people accessing free checks, the quality of care and the impact of diabetes in their enrolled populations. • Personal health strategies should focus on identifying type 2 diabetes earlier, improving the quality of all diabetes treatment, and improving the uptake of services by people with diabetes. Children and young people with diabetes • District Health Boards should review the specialist paediatric services that are available for young people with diabetes. The review should cover access to specialist outpatient services by ethnicity, and by children and young people in rural areas. • District Health Boards should work with key stakeholders to promote programs that improve nutrition, increase physical activity and reduce obesity in children and young people The impacts of diabetes on the cardiovascular system • Primary care organisations/PHOs offering free annual checks should review the prevalence of all cardiovascular risk factors for people in their diabetes register by ethnicity. Specific quality initiatives to optimise treatment in high-risk groups should be developed. • Hospitals should consider implementing systems to ensure people admitted (for any reason) who have raised cardiovascular system (CVS) risk factors receive advice about reducing risk factors. Risk factors and recommendations should be highlighted in discharge summaries or plans for primary care. • Hospitals should ensure that all people admitted with potentially diabetes-related diseases (and especially for CVS disease) are screened for diabetes. Hospitals may consider auditing a sample of clinical records to establish coding accuracy for diabetes. • After primary care organisations have reported on CVS treatment and risk factors by ethnicity, Local Diabetes Teams (LDTs) should review the information and consider recommendations to the DHB for improving the quality and effectiveness of cardiovascular treatment. The impacts of diabetes on the eyes • Funding and performance staff of District Heath Boards should work with Local Diabetes Teams to identify opportunities to improve retinal screening uptake in high-risk groups, and establish targets for the DHB performance indicator. • Primary care organisations/PHOs should review the information about eye screening in their diabetes registers, and work with eye screening services to identify geographic areas or population groups in which screening uptake is low. • Hospitals providing hospital-based eye screening should consider implementing systems that offer appropriate eye screening to people with diabetes who attend outpatients clinics or are admitted for any reason. Such systems are particularly important for ‘hard to reach’ people from rural areas or people who find transport to hospital difficult. • Hospitals should consider a clinical audit of cases of vitrectomy in people with diabetes, in order to establish any opportunities for earlier intervention or improvements in eye screening or laser treatment. • Eye screening services should work with LDTs, primary care organisations, and hospital diabetes specialists to agree on the guidelines and processes for referral into diagnosis and treatment. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 4 • The Ministry of Health will facilitate – with existing eye screening services – the development of a National Eye Screening Quality Programme. The impacts of diabetes on the feet • Primary care organisations/PHOs should review with podiatry services the referral guidelines for people with high-risk feet. • Local Diabetes Teams may choose to recommend retailers trained (perhaps by a local podiatrist) in advising people with diabetes about shoes, foot protection (eg, insoles and socks) and skin care for the feet. • Primary care organisations/PHOs, hospital diabetes services, and other organisations providing formal education for people with diabetes should specify their foot-care education syllabus and supporting education resources. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 5 Development of this toolkit The New Zealand Health Strategy has identified 13 immediate action priority areas for population health. DHBs are required to report annually on progress in each of these priority areas. This toolkit provides information and resources to assist DHBs to achieve the objective of reducing the incidence and impact of diabetes in their communities. It will do so by providing: • a summary of the existing New Zealand strategies and the relevant international evidence about the incidence and impact of diabetes • an outline of the existing national framework for diabetes services • links providing information about the most effective interventions, with practical suggestions for quality improvement in New Zealand • nationally consistent clinical indicators for use by DHBs to monitor quality improvements and diabetes trends over time. This toolkit was developed by the Ministry of Health in association with the National Diabetes Working Group, which is an expert group comprising clinicians, people with diabetes (and their representatives), Maori and Pacific peoples. Scope of the diabetes toolkit Although there are several types of diabetes, the scope of this toolkit is limited to diabetes type 1 and type 2. The toolkit provides information on reducing the incidence of type 2 diabetes through public health programmes. It also discusses reducing the impact of type 1 and type 2 diabetes through treatment and management programmes delivered by primary/secondary care and allied health professionals. This toolkit has been developed for DHB funding and planning teams, LDTs, management staff in health care provider organisations, clinicians, and people with diabetes. Given this broad audience, the toolkit must balance technical detail and general explanations, requiring some compromise. This toolkit will be updated periodically, and once a year the evidence and guidelines will be systematically updated. Linkages This toolkit has clear links with other New Zealand Health Strategy priority areas including: • reducing the incidence and impact of cardiovascular disease – Best Practice, Evidence-based Guideline: The Assessment and Management of Cardiovascular Risk (available from the NZGG website, www.nzgg.org.nz). • improving nutrition – Healthy Eating - Healthy Action. Oranga Pumau – Oranga Kai: A strategic framework • reducing the rate of obesity • increasing the level of physical activity • reducing smoking. Links to cardiovascular disease Even in healthy people before clinical diabetes has developed, there is evidence that blood glucosei and HBA1cii may be independent risk factors for the development of cardiovascular disease. Once diabetes has developed it is very strongly associated with other risk factors for the development of cardiovascular disease, to the extent that lipid abnormalities, raised blood pressure and type 2 diabetes may be regarded as features of a common metabolic syndrome. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 6 Links to nutrition Ministry of Health publications relating to nutrition Nutrition and the Burden of Disease Nutrition influences weight. Diet and nutritional planning that prevents weight gain during adult life will have the positive benefits of reducing the risk and improving the management of diabetes. Diet is also fundamentally important in managing insulin treatment for people with both type 1 and type 2 diabetes. There is substantial and mounting evidence that changes to diet and lifestyle significantly reduce the incidence and impact of type 2 diabetes. In a recent United States study of 3,234 people with impaired glucose tolerance (the Diabetes Prevention Program, DPP), the risk of developing type 2 diabetes reduced by 58 percent for those who received intensive lifestyle and nutrition counselling.iii For those on the drug arm of the study (850 mg Metformin bd), risk of development reduced by 31 percent. These results are consistent with those of a 2001 prevention study undertaken in Finland.iv Dietitians play a central role in the nutrition counselling and follow-up required in the ongoing management of diabetes. Links to obesity and physical activity Prevention of Obesity and Type 2 Diabetes in New Zealand Children (available from the Diabetes New Zealand website, www.diabetes.org.nz) People who are overweight or physically inactive have a higher chance of developing type 2 diabetes than their contemporaries. Weight loss and/or increased physical activity will reduce the chance of these people developing diabetes in future. In New Zealand and every comparable country, increasing obesity rates have led to a significant increase in the proportion of people who develop type 2 diabetes in any given age group. The term diabesity has been used to refer to this combined epidemic. For people with newly diagnosed type 2 diabetes, both weight loss and physical activity can be very effective in managing diabetes – provided that they are sustained in the long term. Links to smoking People with diabetes who smoke are at significantly higher risk of developing cardiovascular complications associated with diabetes, including coronary heart disease and stroke. It is of particular concern that rates of smoking remain high in Maori, a population with a higher prevalence of diabetes than the general population. He Korowai Oranga – Maori Health Strategy New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 7 Introduction Key points • Diabetes is defined by abnormalities in glucose levels in the blood, but it affects virtually every organ in the body. • Both type 1 and type 2 diabetes are increasing in incidence. Type 2 diabetes is diagnosed increasingly in children and teenagers. • Type 2 diabetes is a substantially preventable condition. The main factors contributing to the increasing incidence of type 2 diabetes are rising levels of obesity and physical inactivity in New Zealand populations. Main actions for DHBs • Public health strategies are crucial to reduce both the incidence and impact of type 2 diabetes. • A disease management approach to diabetes is needed, with multidisciplinary services that have the information and knowledge to drive continuous quality improvement at every stage in the development of diabetes and its complications. • Personal health strategies should focus on identifying type 2 diabetes earlier, improving the quality of all diabetes treatment and improving the uptake of services by people with diabetes. • Effective communication links among care providers from primary to tertiary level, including allied health providers such as podiatrists and dietitians, are vital to ensure the co-ordination of diabetes services. What is diabetes? Diabetes is characterised by raised blood glucose levels as a consequence of insulin undersecretion, insulin resistance, or both. Diagnostic criteria for diabetes have been agreed by the World Health Organizationv and the major clinical diabetes organisations in Australasia.vi Type 1 diabetes typically develops in children and young adults. It is an auto-immune disease in which insulin-producing cells in the pancreas are destroyed. People who develop type 1 diabetes will become dependent on balancing injected insulin, diet and exercise for control of blood glucose levels. The reported incidence of type 1 diabetes is ‘very high’ in New Zealand compared with other countries. For reasons that are not yet clear, the incidence of the condition appears to be increasing in New Zealand and internationally.vii The provision of health care services for people with type 1 diabetes should reflect that its impact on quality of life and long-term complications are substantially greater than for type 2 diabetes. Type 1 diabetes is less common in Maori and Pacific peoples than in New Zealand Europeans. Type 2 diabetes is caused by reduced insulin secretion and/or resistance to the action of insulin on body tissues. In all people the ability of the pancreas to secrete insulin in response to body needs falls progressively with age. Decreasing insulin secretion capacity results in impaired glucose tolerance, which then leads to the development of type 2 diabetes. Strong links have been established between type 2 diabetes and obesity. A hormone released by fat cells that exacerbates the effects of falling insulin levels may mediate this relationship.viii A range of oral diabetes medications is used in the treatment of type 2 diabetes. These medications function by stimulating insulin release, decreasing insulin resistance or affecting carbohydrate absorption. Many people with type 2 diabetes eventually require insulin to maintain optimal treatment as diabetes progresses. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 8 Burden of disease Type 2 diabetes is about three times more common in Maori and Pacific peoples than in New Zealand Europeans. Overall it represents about 95 percent of known diabetes in Maori and Pacific peoples, and about 89 percent of known diabetes in New Zealand Europeans. Type 2 diabetes typically develops in people over 40–50 years old, although the onset may be earlier in overweight people and in Maori or Pacific peoples. In recent years, however, type 2 diabetes has increasingly been recognised in teenagers and even younger children. ix In the United States of America the mean age of children at diagnosis of type 2 diabetes is between 12 and 14 years, and the condition is most common in females, non-Europeans, and people who are overweight, inactive, have a family history of diabetes or were exposed to diabetes in utero. x This trend is disturbing as these people are almost certain to develop the advanced complications of diabetes during their lifetime, and will represent a significant burden of disease in future years. Reducing the incidence and impact of diabetes through public health or any other health measures will be extremely challenging as type 2 diabetes already represents a substantial burden of disease for New Zealanders. Figure 1 reflects the extent to which diabetes relative to other major risk factors contributes to disability adjusted life years. Figure 1: Attributable burdens, total mortality, for different causes, 1997 Source of base data: compiled from multiple sources Note: Diabetes – as a risk factor for other diseases as well as a disease in itself Source: Ministry of Health (2003)xi As well as representing a substantial burden of disease currently, the prevalence of type 2 diabetes is increasing in New Zealand. With the number of people with diabetes in New Zealand predicted to increase 1.8 fold by 2011, the burden of diabetes and its complications will rise significantly. A proportion of this increase in prevalence will be the result of the ageing New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 9 population and other demographic trends, but almost one third will be a consequence of more common obesity. Type 2 diabetes is a substantially preventable condition, at least in theory, given sustained reduction of modifiable risk factors such as obesity, physical inactivity and smoking. The challenge to health systems in New Zealand and around the world is to develop programmes that achieve a sustained reduction of risk across the population. Control and treatment of diabetes In general, there are three kinds of opportunities to improve the quality and effectiveness of personal health services. 1. Intervene earlier: Type 2 diabetes generally remains asymptomatic for several years. Diagnosis, and therefore treatment, are often delayed. It is estimated that approximately half the people with diabetes in New Zealand and Australiaxii have not been diagnosed. For these people, by the time the diagnosis is made and treatment started, complications have already developed in a significant proportion of people. 2. Intervene more effectively: There is substantial evidence from New Zealand and overseas that the quality of treatment could be significantly improved. xiii To this end, structured systems should include regular recall and review using evidence-based guidelines by appropriately trained and experienced primary care clinicians.xiv Referral to appropriate specialist services must use set clinical criteria to identify those at highest risk. 3. Improve the uptake of interventions: Many people with diagnosed diabetes do not reliably access treatment available to them. This group includes some of the people at highest risk of developing diabetes complications. The technical quality of diabetes treatment services may be excellent but, to be effective, they must reach those most in need of them. It is generally agreed that the core barriers to increasing uptake in New Zealand include: – difficulty accessing specialist services from the community – the cost of services and medications – lack of choice of culturally appropriate services – psychosocial factors related illness perception and beliefs. The three kinds of opportunities to improve the quality and effectiveness of personal health services, as identified above, require multidisciplinary care teams, in which clinicians from primary through to tertiary care, people with diabetes, and people from related consumer support organisations work together. Primary health organisationsxv are pivotal in co-ordinating and providing a more comprehensive range of services that are: • easily accessed by people most in need • at a cost that they can afford • in a setting that is culturally safe and effective in motivating self-management and lifestyle change.15, 16, 17 Major complications of diabetes are managed largely through specialist care in hospital and other settings. This toolkit provides information on the treatment of diabetes from primary to tertiary care. The role of DHBs Both the incidence and impact of type 2 diabetes are strongly linked to socioeconomic deprivation in our communities. Strategies to control diabetes should therefore extend well beyond the health sector. DHBs are well placed to co-ordinate local, multisector programmes that target the gaps between those most and least advantaged in our society. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 10 Moreover, DHBs are in an excellent position to integrate public health, primary health and specialist hospital services in their areas to ensure that the programmes to reduce the risk of diabetes, and the services available to people with diabetes, are as effective as possible. This integrative potential will be especially evident when both personal and public health are included in population-based funding. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 11 Strategic direction – disease management approach In 1997 the Ministry of Health set out its strategic direction for diabetes management in Strategies for the Prevention and Control of Diabetes. That document advocates a disease management approach to diabetes. Such an approach would focus on people with diabetes and their experience of the complete clinical course of the condition, rather than viewing diabetes care as a series of discrete episodes within different parts of the health system. The aims of Strategies for the Prevention and Control of Diabetes are to improve co-ordination and information flows among stakeholders in diabetes care and to improve diabetes services through integrating primary, secondary and allied health services. To that end, in managing diabetes services DHBs should consider the three fundamental components proposed for disease management by Hunter and Fairfield:xvi ‘Research, performance measurement, and quality improvement.’ The Ministry of Health’s strategic direction for diabetes addresses the full course of diabetes from primary prevention of type 2 diabetes to the treatment of diabetes and its complications. In summary, the strategies focus on four areas of action: 1. primary prevention of type 2 diabetes 2. identification of people with diabetes, and enrolment into structured programmes in primary care 3. monitoring of the health of people with diabetes through free annual checks, and the use of population-health information from these checks for quality improvement and service planning 4. treatment planning, including the full spectrum of care from community- to hospital-based, and including allied health services (eg, podiatry and dietetics). While including the primary prevention of type 2 diabetes through increasing physical activity, improving nutrition and reducing obesity, Strategies for the Prevention and Control of Diabetes notes that influencing such lifestyle changes was difficult and was largely reliant on factors beyond the control of the health sector. One of the key strategies in the 1997 document is to fund research and develop integrated pilot programmes to prevent diabetes, especially in high-risk populations such as Maori and Pacific peoples. The 1997 strategy document was followed in 2000 with the Health Funding Authority’s Diabetes 2000 implementation plan. Diabetes 2000 describes services and structures to be put in place to deliver on the strategy. It also provides a framework for service delivery (see ‘Reducing the impacts of diabetes’). The initiative at the centre of the framework is the implementation of the free annual check, which provides an opportunity for people with diabetes to check, with their general practitioner or practice nurse, that the important diabetes tests and examinations have been completed each year, and agree on a treatment plan for the coming year. In addition, Diabetes 2000 established the LDTs, with representation from practitioners at all levels of diabetes care, along with consumer representatives. LDTs provide: a local integrated group to oversee diabetes care within each region analysis of data from primary care advice to DHBs on service planning. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 12 (These services are described in greater detail in ’Reducing the impacts of diabetes’.) Download Diabetes 2000 New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 13 Reducing the incidence of type 2 diabetes Key points • The scope of this section is limited to reducing the incidence of type 2 diabetes. • The global epidemic of type 2 diabetes is having an increasing impact on disability, premature mortality, and consumption of finite health resources. • Maori and Pacific populations are amongst the highest risk groups for diabetes and for cardiovascular disease and related conditions. • Effective primary prevention programmes for type 2 diabetes are largely based around programmes for the reduction of diabetes risk factors. • Research sentinel sites will be established to gather evidence on community-based primary prevention programmes for type 2 diabetes. • Opportunistic screening in primary care has the potential to provide an effective system for earlier detection of diabetes. Type 1 diabetes is an auto-immune condition. As its cause is unknown, it is not possible at present to implement services to reduce its incidence. For that reason, the scope of this section is limited to reducing the incidence of type 2 diabetes. In New Zealand by 2011, the prevalence of diabetes is predicted to increase by 58%, 132% and 146% in European, Maori and Pacific populations respectively. This increase reflects changing demographic factors (including increased population size and changes in population age structure) and epidemiological factors (such as obesity and physical inactivity). The above figures highlight the substantial challenge represented by the New Zealand Health Strategy. The changes in our population mean that the prevalence of diabetes would not be reduced absolutely even if the increase in obesity and physical inactivity were completely halted over the next 20 years. The increasing incidence of diabetes will inevitably mean that diabetes has a greater impact in New Zealand. However optimally applied, no treatment exists that can compensate (by preventing diabetes complications) for even a twofold increase in the number of people with diabetes. In summary, without reducing the incidence we will not be able to reduce the total impact of diabetes either. Fortunately New Zealand has the experience and infrastructure to lead the world in developing effective and validated interventions to reduce the incidence of diabetes in future. In review of the international evidence around potentially modifiable risk factors, J Mann xvii summarises the limitations of approaches targeting people with impaired glucose tolerance (IGT), endorses the essential role of community-based primary prevention programmes, and highlights the critical importance of applied research. Community-based primary prevention in New Zealand Effective primary prevention programmes for type 2 diabetes are largely based around programmes to reduce diabetes risk factors, such as be reducing overweight/obesity, stopping smoking and increasing physical activity. Such programmes extend beyond the health sector, involving local government, employers, education and community groups, amongst others. Maori and Pacific populations are amongst the highest risk groups for diabetes and for cardiovascular disease and related conditions. These populations traditionally have strong New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 14 community links, which are important to the success of health programmes targeting the above risk factors. There is little New Zealand evidence for community-based primary prevention interventions, while international evidence is equivocal with regard to whether such programmes can reduce diabetes incidence in the longer term. The Diabetes 2000 implementation plan proposes that research sentinel sites be established to develop community-based programmes for primary prevention of type 2 diabetes in a New Zealand setting (see ‘Research into primary prevention and screening’). Dr Andrew Lindsay from Auckland Public Health has reviewed the evidence for primary prevention from New Zealand and overseas studies. He concluded that community-based primary prevention programmes were justified.xviii Subsequently international studies have given more support to this conclusion. Download Dr Lindsay’s full paper - Primary Prevention of Type 2 Diabetes - A Critical Appraisal of Community Based Primary Prevention Programmes Screening for type 2 diabetes Type 2 diabetes generally remains asymptomatic for several years. For this reason it is estimated that half the people with diabetes in New Zealand and Australia have not been diagnosed and therefore remain untreated. International evidence suggests that in determining whether screening programmes are implemented, their potential benefits should be carefully weighed against the costs and ethical considerations. A recent review from the United Kingdomxix reached the following conclusions: • Universal screening for diabetes is unmerited, but targeted screening in specific high-risk subgroups may be justified • The benefits of early detection and treatment of undiagnosed diabetes have not yet been proven. The potential disadvantages of screening should be quantified • Effectiveness of diabetes screening in reducing cardiovascular disease depends of disease prevalence, background cardiovascular risk, and risk reduction in those screened and treated • Clinical management of people with established diabetes should be optimised before a screening programme is considered. Experience from other countries shows that the effective implementation of broad-scale community screening programmes is fraught. For example, the American Diabetes Association recently withdrew its recommendations about community screening in the absence of evidence of cost-effectiveness. Although current international evidence does not support broad-scale community screening, it does indicate that screening targeted at high-risk populations or groups may be effective. Targeted screening in Maori and Pacific populations may therefore be effective provided that it is carefully planned and that services ensure that people who screen positive are referred reliably for diagnosis and treatment. Any screening programmes developed should screen for cardiovascular disease and diabetes together, given the extremely close association between these conditions. Opportunistic screening in primary care (where patients presenting for other reasons, but exhibiting risk factors for diabetes are screened for diabetes) has the potential to provide an effective system for earlier detection of diabetes. The New Zealand Health Survey found that over 80 percent of people had seen their general practitioner or nurse in the previous year, which implies that primary care organisations working within set screening criteria would have the opportunity to detect people with a high diabetes risk. Diagnostic testing should be offered to anyone exhibiting hypertension, lipid abnormalities, or possible diabetes symptoms who presents New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 15 to a general practitioner or nurse in primary care. Opportunistic diabetes screening criteria would extend beyond such symptoms and include general risk factors. An evidence-based review commissioned for New Zealandxx reached the following conclusions: • No single test can distinguish people with diabetes from those without diabetes • Several screening tests are available, and all are more accurate at distinguishing diabetes from non-diabetes in high-risk populations • Within the first two groups assessed, the authors preferred fasting glucose and random glucose as the cheapest and most widely used screening tests practised internationally • The authors discouraged the use of urine testing for screening • The authors recommended screening the following groups: – non-Europeans > age 30, and Europeans > age 40 if other risk factors present (retest three-yearly following negative screening test) – non-Europeans > age 40, and Europeans > age 50 in the absence of other risk factors (retest three-yearly after negative screening test) – all people (regardless of age) with a past history of impaired glucose tolerance or impaired fasting glucose (retest yearly following negative screening test). • General practice is the preferred venue for screening as 80–90 percent of people who may need screening attend a general practice annually. • All parties involved in screening should be educated and trained to correctly test, interpret results and ensure appropriate follow-up of tests. See the full paper of the review www.nzgg.org.nz/working_groups/diabetes.cfm - Screening New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 16 Reducing the impact of diabetes Key points • Effective diabetes care requires a collaborative and integrated team approach. DHBs are well placed to ensure diabetes services are delivered consistently and effectively. • A framework has been developed for the delivery of diabetes care and the promotion of continuous quality improvement. • The foundation for diabetes services is the free annual check, delivered at primary care level to reduce the risk of developing diabetes complications. • How people with diabetes manage their condition is a significant factor in determining the long-term outcomes of diabetes. Diabetes education is therefore extremely important, but there are major challenges to delivering effective education programmes. • The already high levels of morbidity and mortality caused by diabetes complications are likely to become higher as more people get diabetes. It is therefore vital that specialist services preventing and treating diabetes complications are effective. National framework for diabetes services Unstructured care in the community is associated with poorer follow-up, greater mortality, and worse glycaemic control than hospital care. Computerised central recall, with prompting for patients and their family doctors, can achieve standards of care as good or better than hospital outpatient care, at least in the short term. This evidence supports provision of regular prompted recall and review of people with diabetes by willing general practitioners and demonstrates that this can be achieved, if suitable organisation is in place. Cochrane Review (Nov 1997) The national framework for diabetes services was developed to ensure that a structured quality system for delivering diabetes care – including regular recall and review of all people with diabetes – is available. Effective diabetes care requires a multidisciplinary team. In addition, to effectively deliver the full spectrum of services to those people with diabetes who require them, diabetes care must ensure that clinical services, including podiatry and dietetics, are aligned with primary and hospital-based clinicians. In New Zealand non-medical clinical services have typically been accessed through referral of the patient by primary care to hospital outpatient diabetes services. There is a national framework for hospital services (including those for diabetes) separate to this framework for diabetes in primary care. It is recommended that the framework for diabetes services in primary care and the framework for outpatient services should be streamlined to enable the seamless delivery of diabetes services within a district. Figure 2 shows the relationships between people with diabetes, health care providers and other organisations involved in the care of people with diabetes. It shows the types of services provided through primary, secondary and allied health services, as well as illustrating the flow of information among organisations. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 17 Figure 2 The national framework for diabetes Free Annual Check Person with Diabetes With general practitioner and/or primary care diabetes nurse • Reviews treatment against guidelines • Undertakes any outstanding tests • Agrees on a treatment plan for the year Primary health organisation • Maintains register of data from free annual checks • Promotes quality improvement • Provides feedback to general practices • Reports aggregated diabetes data to Local Diabetes Team • Refers to other services if required • Passes data to primary health organisation Local Diabetes Team • Includes clinical and consumer representation Diabetes retinopathy eye screening Hospital (and non-hospital-based) specialist services • Provides feedback to referring practice • Provides feedback to referring practice • Provides information to Local Diabetes Team • Provides information to Local Diabetes Team • Combines information from all public health organisations in DHB area • Collects information from hospital and other specialist services • Analyses information and develop recommendations for service improvements • Prepares an annual report and provides it to DHB District Health Board • Conducts health needs assessment, including consideration of recommendations in the Local Diabetes Team report, when planning diabetes services • Includes diabetes in annual plan • Communicates with DHB population New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 2 18 Management and planning The framework in Figure 2 describes the information flows among the key stakeholders involved in diabetes care. This section outlines the role of a number of people and organisations involved in diabetes care. People with diabetes People with diabetes are clearly the primary stakeholders in diabetes care. A number of consumer groups represent and support people with diabetes. Diabetes New Zealand is the largest of these organisations with membership of over 13,500 people. Diabetes New Zealand, through its network of 36 regional diabetes societies, raises awareness and provides resources to assist people with diabetes to learn about their condition and how it should be managed. Diabetes New Zealand also manages a mail-based supply scheme (Diabetes Supplies Ltd) for blood glucose meters, testing strips, other diabetes products and educational resources. Diabetes New Zealand can be contacted through www.diabetes.org.nz The prevalence of type 2 diabetes is significantly higher in Maori than in the general population. Te Roopu Mate Huka is a Maori consumer organisation established to support Maori people with diabetes and to raise awareness of diabetes amongst Maori. Diabetes Youth New Zealand (DYNZ) is a national group representing children and youth with diabetes. Most children and youth with diabetes have type 1 diabetes and have quite different needs from adults, both medically and socially. DYNZ provides support for the child and family, produces educational resources, runs camps for children and adolescents with diabetes, and advocates for the needs of its members. In addition to this work at the local level, the DYNZ committee organises national fund-raising, provides a national newsletter and provides representation on the National Diabetes Forum and the International Diabetes Federation. District Health Boards DHBs are ideally placed to ensure that diabetes prevention and treatment services in a district are planned and delivered consistently and effectively. DHBs will be in the best position to foster a collaborative and integrated team approach to diabetes prevention and care involving consultation with provider and consumer organisations. DHBs and the Ministry of Health will work together to promote continuous quality improvement for diabetes services. Diabetes status as one of the 13 priority areas noted in the New Zealand Health Strategy should be reflected in DHB planning and in documentation prepared by DHBs. The Ministry of Health expects that strategic plans prepared by DHBs will contain specific information about diabetes, and that DHBs will prepare a comprehensive annual plan identifying priorities and targets for diabetes services. DHB annual plans should specify: • priorities identified for diabetes • targets for diabetes, including targets for the clinical indicators specified in this toolkit (see ‘Modelling and quality assurance’) • the services available for people with diabetes, which must include a free annual check for people with diabetes, first specialist and follow-up attendances, and multidisciplinary education and management services as presently funded from public hospitals • the workforce resources input into diabetes • the workforce development that will be provided. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 19 It is anticipated that DHBs will make one person accountable for the planning and co-ordination of diabetes services within the district. This person should be available to co-ordinate planning in provider organisations and will be the DHB’s representative on the LDT. Annual plans for primary care organisations/PHOs and the hospitals in a DHB should also include specific sections on diabetes services, and the priorities and targets should be consistent with DHB plans. It is expected that the DHB, or one of its mandated subcommittees, will consider the recommendations of the LDT when developing its strategic and annual plans. A recent paper by Klonoff and Schwartz, who examine the costs and benefits of 17 diabetes interventions, may provide useful guidance to DHB management.xxi These interventions are discussed in more detail throughout this toolkit. Local Diabetes Teams LDTs were established to meet the need, as identified in Diabetes 2000, for a team of local stakeholders to oversee the planning, implementation and integration of diabetes services in their district. The Ministry of Health views LDTs as a vital local asset and well placed to provide advice to DHBs on the state of diabetes services across the district. The service specification for LDTs identifies the minimum set of organisations that should be represented on them. LDTs should include representatives from the DHB, diabetes providers (from primary to tertiary care), diabetes consumer organisations, and Maori and Pacific communities. The major output of LDTs, as stated in the service specification, is the preparation of an annual report summarising the free annual check data from primary care organisations throughout the district, and recommending improvements to diabetes services. Download the Local Diabetes Team service specification Ministry of Health During 2003/04 the Ministry of Health will continue to focus on: collaborating with the sector to ensure all people with diabetes can access primary health care ensuring people get quality advice on self-management of their diabetes. Included in the Ministry of Health programmes are the following: • The Ministry of Health will work with primary health organisations and practice management system vendors to further improve diabetes information systems. The priorities identified are to improve user friendliness, improve decision support linked to evidence-based guidelines and develop customisable treatment plans • A National Diabetes Database that could be used to link encrypted data uploaded from primary care organisations to mortality and hospitalisation data • The Ministry will continue to fund diabetes awareness and support services provided by Diabetes New Zealand. This includes free glucose meters and test strips for people with Community Services Cards. Applied research: The Ministry has established the National Diabetes Research Strategy in association with the Health Research Council of New Zealand. The first priority is to fund the community-based projects for primary prevention and screening (see Diabetes 2000). Other research areas will be addressed where funding permits. The Ministry of Health will continue to support the New Zealand Guidelines Group in updating clinical guidelines. The latest diabetes guideline update is November 2003. In regard to evaluation and quality improvement: New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 20 • an evaluation tool for use by DHBs to assess the quality and integration of diabetes services has been developed with DHBs • the Ministry of Health is funding and will support the establishment of a national quality assurance programme for retinopathy screening. Toolkit maintenance: Ongoing development and updating of this diabetes toolkit will be required. The benefits and costs of specific diabetes treatments will be reviewed and published in later editions of this toolkit. The Ministry of Health will also continue to provide support for DHBs and LDTs. Primary care – free annual check A free annual check is funded through the national Get Checked programme for all people with an established diagnosis of type 1 or type 2 diabetes. People with gestational diabetes, or those who have never met the diagnostic criteria for diabetes, are not funded for free annual checks. The free annual check is delivered at primary care level by a general practitioner or appropriately trained primary care nurse with access to primary care notes. The primary care provider may be a primary care organisation, or a Maori or Pacific provider organisation. A key objective of the free annual check is to decrease the barriers to accessing high quality care for Maori and Pacific peoples. For that reason, services should be provided at venues that are appropriate to maximise access by Maori and Pacific peoples. Primary care organisations must maintain electronic registers of information collected through the free annual checks, using a minimum dataset defined in the service specification. Aggregated (non-identifiable) summaries of that information must then be transferred to LDTs for each DHB. The free annual check is the foundation for diabetes services. It is designed to improve the coordination of services delivered by all health care providers. The objectives of the free annual check are to: • systematically screen for the risk factors and complications of diabetes to promote early detection and intervention. Note the free annual check is to check that the screening has occurred in the previous year, and does not require all tests or examinations are repeated at the time of the annual check • agree on an updated treatment plan for each person with diabetes. The treatment plan (or equivalent) should be provided in writing and verbally for the person with diabetes, and any other providers of diabetes support (eg, whanau) • update the information in the diabetes register used as a basis for clinical audit and planning improvements to diabetes services in the area • prescribe treatment and refer for specialist or other care if appropriate. The free annual check must include: • a review of symptoms and concerns of the person with diabetes or their whanau • an examination for risk factors and complications, which must include a foot examination and advice about basic foot care (for clinical guidelines see ‘Additional information and resources for diabetes primary care’) • a fasting blood test for cholesterol, HDL and triglycerides • a blood test for HBA1c • a urine test for early nephropathy, as clinically indicated • prescription for medications, glucose test strips or glucose monitors (as required) New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 21 • information for the person with diabetes and their consent for the use of information by the primary care organisation. Specific consent must be obtained from the patient if the primary care organisation proposes to forward identifiable contact or clinical information from the primary care organisation to other diabetes service providers • forwarding of the minimum information from the practice to the primary care organisation for analysis and reporting • the development and agreement of a treatment plan that includes feedback to the person with diabetes and their whanau, an agreed self-management plan (including any changes to medication) and plans for referral to specialist services. The 2002 national Get Checked results are available here as a PDF. Additional information and resources for diabetes primary care • A range of resource materials was developed for the Get Checked programme, including posters and pamphlets in different languages, and a video targeting Maori. These resources are available from public health information outlets. • For the guidance of general practitioners and primary care nurses, the New Zealand, evidence-based guidelines for diabetes interventions are available at www.nzgg.org.nz/. • The National Waiting Times project developed referral guidelines. Those guidelines are available from www.nzgg.org.nz/ for the information of general practitioners and primary care nurses. Diabetes education and self-management The choices that people with diabetes make about managing their lifestyle and treatment options are significant factors in the long-term outcome of the condition. It is therefore vital that their choices are informed. Informing people with diabetes requires effective and accessible education and management programmes. Multidisciplinary teams in hospitals or in community settings currently deliver diabetes education and management services. The composition of teams, and the services/programmes they provide, should be flexible, responding to the specific needs of the population and individuals. The diabetes education and management team should incorporate dietetic and podiatry services as well as more general diabetes education. Improving the effectiveness of diabetes education and self-management is a major challenge for diabetes educators. Effective self-management is also a major challenge for the people who matter most – people with diabetes. Type 1 diabetes For people with type 1 diabetes and their families/whanau, formal education is essential for maintaining quality of life and reducing the risk of poor health outcomes. Formal education occurs at the time of diagnosis and is sustained thereafter by specialist teams and primary care. For people with type 1 diabetes informal education occurs every day through experience with self-testing and adjusting insulin dosage, diet, exercise and the other complex variables in their lives. Professional support for the informal learning process is also important. It can be delivered in a variety of ways, for example through telephone support. In New Zealand and internationally, youth camps can be an appropriate venue for diabetes continuing education in young people. They may be a very effective and cost-effective method for delivering services. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 22 Type 2 For people with type 2 diabetes, education around the treatment and control of diabetes is important. However, the challenges for motivating weight loss, physical activity and compliance with medication are perhaps even more significant than in type 1 diabetes. The extent of the challenge arises because the rewards of self-management and healthy lifestyles in people with type 2 diabetes are typically difficult to achieve, and may never be apparent to the asymptomatic individual. Thus the programmes developed need to be effective in motivating sustained behaviour change. Current international evidence (outlined in the reviews of evidence below) challenges the underlying premise that knowledge about diabetes is reliable in motivating changes in lifestyle or the ability to sustain these changes. The Alberta Heritage Foundation for Medical Research in Canada recently published a systematic review of the evidence for patient diabetes education (PDE).xxii The review found that it was not possible to identify consistent factors that made the many types of patient education programmes effective. That is not to say that education is ineffective, rather that no one approach is necessarily more effective than another. This finding illustrates the complexities of patient diabetes education, and indicates that more research should be undertaken to fill knowledge gaps. DHBs should specifically consider the recommendations for administrators of PDE programmes in the abridged summary of the Alberta Heritage Foundation for Medical Research review, which is provided below. Abridged summary of the Alberta Heritage Foundation For Medical Research Review of Patient Diabetes Education (PDE) The published reports on the effectiveness of PDE as a tool to promote self-management in adults with type 2 diabetes produced mixed results in terms of improved metabolic control and reduced risks for diabetes-associated complications in the long term. The results are not directly comparable since investigators have used different designs. Inadequate data presentation also limited the interpretation of the available evidence. The main finding of the review was that the long-term diabetes control outcomes of formal PDE, when used to promote self-management in adults with type 2 diabetes, have yet to be defined. Appropriate measures are also not yet established. The available evidence did not permit reliable conclusions to be drawn on: • which types of programmes or what components are most effective in improving the ability of adults with type 2 diabetes to self-manage their disease • which category of patients might benefit most. This review confirmed results of previous reviews: • there is no consistent pattern of effect across outcomes based on type of intervention, length of educational intervention, core team composition or type of educational setting • there is no standard method to describe formal PDE programmes and interventions, thus making it difficult to replicate studies. Findings from qualitative research studies were useful in illuminating the findings from quantitative research studies, by helping to better understand the context in which formal New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 23 PDE should be applied to be successful in promoting self-management behaviours in adults with type 2 diabetes. The administrators of formal PDE programmes need to consider that the trends in formal PDE delivery call for: • an ongoing, patient-centred PDE approach, described as a step-by-step process that involves the diabetes care and education providers, the patients and their caregivers • focus on meeting the patient’s needs and overcoming patient’s barriers to self-management behaviours, and continuous reinforcement of patient’s positive behaviours, in addition to transmission of knowledge and skills • the development of trustful patient–educator relationships and the existence of a good partnership with the other members of the diabetes management team • measurement of PDE success in terms of both long-term outcomes and short-term outcomes, regardless of PDE approach • data collected for each outcome by using a more standardised set of validated instruments. None of the Canadian studies published over the last 10 years met the criteria in the working definitions and inclusion criteria for review. Canadian investigators can build upon the research described in this report and should attempt to overcome the methodological limitations of the reviewed studies. Approaches to learning programmes for people with diabetes There are three broad categories of interventions to support behaviour change in people with diabetes: information and skills programmes, cognitive behavioural interventions, and patient empowerment. Programmes can be delivered individually, or through group sessions, and there is no reliable evidence to suggest that any of these methods is superior to any other. The core module for type 2 diabetes education must include nutrition, physical exercise, footcare, diabetes awareness, the importance of eye screening, annual screening for complications, and compliance with prescribed medication. The programme should be integrated with treatment, which occurs largely in primary care. There are many providers of education in communities around New Zealand, and there are a variety of programmes. Examples of new or novel means of delivering information include: • Internet-based advice (eg, the Diabetes New Zealand web site) • telephone support • group sessions, which may include supermarket or market tours, cooking sessions, exercise programmes, practical sessions on what to look for in buying shoes and socks. The role of DHBs and LDTs DHBs and LDTs are best able to identify the information needs of people with diabetes in their area. They are also well placed to develop core learning modules or educational programmes with a range of choices to suit the needs of different people. The quality of the educators involved is of the greatest importance in determining the success of programmes. Criteria for the evaluation of the effectiveness of programmes should be determined and programmes should be monitored against them. There should be ongoing improvement to systems to support and involve people with diabetes. Diabetes registers in primary care organisations provide the potential to monitor the longer-term New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 24 changes in factors that predict health outcomes for groups that have completed education programmes, and the educators themselves will then have a better opportunity to learn, and demonstrate, what is effective. Guidelines and reviews of evidence There is currently no evidence-based guideline in New Zealand for formal patient diabetes education. The Alberta Heritage Foundation for Medical Research review of the evidence for education and self-management is available in full at http://www.ahfmr.ab.ca/. The NHS Centre for Reviews and Dissemination has systematically reviewed the evidence on promoting self-management as part of developing national clinical practice guidelines for nephropathy treatment. That review is available at www.qualityhealthcare.com. Hospital and other specialist diabetes services As discussed above, for the ongoing management of diabetes, community-based primary care services are important. In addition to management at primary care level, many people with diabetes will also require ongoing specialist care. Much of this specialist care is delivered through outpatient clinics. The National Service Framework (Ministry of Health Data Dictionary v8: National Service Framework, Hospital Specific and Public Health Purchase Units for Services provided by District Health Boards) specifies the outpatient diabetes services available from hospitals. Historically specialist physician clinics have been purchased differently depending on the hospital resources. Smaller hospitals without diabetologists have received diabetes funding bundled with funding for general medical outpatient attendances, but some larger hospitals have received funding for diabetes clinics as part of endocrinology services. Traditionally, paediatric diabetes services have been funded separately from adult diabetes services, and the transition from the paediatric to adult services occurred at different ages, depending on the needs of the individual concerned. Acute hospital care will also be required for people with diabetes in a number of situations, including (but not limited to): • acute cardiovascular events • acute renal failure • episodes of ketoacidosis • hypoglycaemic coma. Hospital services required to manage such acute situations and the treatment of non-acute diabetes complications include (but are not limited to): general medical, surgical and acute services, intensive care, renal services and ophthalmology. The co-ordination of hospital diabetes services and acute general medical/surgical services accessed by people with diabetes with primary care and supporting services (such as dietetics and podiatry) is an important factor in determining the outcome of care for the patient. Discharge planning is an area that highlights the importance of effective communication and co-ordination of care for effective ongoing management and treatment following discharge of the patient into primary care and/or rehabilitation services. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 25 Type 1 diabetes in children and young people Type 1 diabetes is one of the most common serious diseases in children and young people. The reported incidence of type 1 diabetes is rising, both in New Zealand and other countries for reasons that are not known. Type 1 diabetes is not curable and research has not yet produced any evidence that preventing it is possible. Type 1 diabetes has a major impact on individuals and their families or caregivers. The management of type 1 diabetes includes meticulous attention to diet and exercise, frequent selftesting and insulin injections. Type 1 diabetes has the potential to affect every aspect of social and physical development in children and young people, and brings a constant risk of ill health. The impacts of type 1 diabetes in young people extend beyond the family, as teachers and friends must understand the condition and its implications, particularly for very young children who are unable to manage the condition on their own. Diabetes care should be delivered through multidisciplinary teams that include specialised paediatric services and primary care clinicians. Each team should share information and coordinate support for individuals and their families. Diabetes services for young people can be structured in a range of ways including through mobile specialist clinics, youth camps, one-stop youth shops, and specific telephone or Internet support. Few evaluations have compared or assessed the quality and quantity of care available for children with type 1 diabetes and their families in different areas of New Zealand. Type 1 diabetes is less common in Maori and Pacific peoples than in other New Zealanders. Paediatricians, however, report that on average young Maori and Pacific peoples achieve poorer diabetes control than other young New Zealanders. More targeted, accessible services and culturally appropriate education are required to improve the outcomes for those groups. Guidelines and reviews of evidence The Australian Paediatric Endocrine Group Handbook on Childhood and Adolescent Diabetesxxiii includes useful information on the management of diabetes in children and adolescents. The chapter on ambulatory care provides guidelines for services required for the child and family and the checks that should form part of a comprehensive evaluation at least once a year. The International Society for Paediatric and Adolescent Diabetes produced the ISPAD consensus guidelines in 2000. The Diabetes Research Foundation in Australia in association with the Juvenile Diabetes Association produced The National Needs Assessment of Children and Adolescents with Diabetes. It reflects many of the ISPAD guidelines from a consumer viewpoint. Suggested action points • The Ministry of Health will work with Diabetes Youth New Zealand and other stakeholders to review paediatric diabetes services and to develop a national service framework. • District Health Boards should review the specialist paediatric services that are available for young people with diabetes. This review should cover access to specialist outpatient services by ethnicity, and by children and young people in rural areas. • Hospital paediatric services should use the National Paediatric Diabetes Database available from Starship Hospital to capture data in a nationally consistent manner. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 26 The impacts of diabetes on body systems The Ministry of Health has prepared papers detailing the impacts of diabetes on the cardiovascular system, on eyes and on feet, describing the evidence supporting the treatment interventions indicated. A summary of the key points and actions from the three papers is presented here and the full papers can be downloaded by clicking on the links indicated. Further papers on the impacts of diabetes on other body systems will be added to the toolkit in the future. A summary of the key points and actions from the three papers is presented here. Links are also given to the full papers. The impact of diabetes on the cardiovascular system Download the full paper on the impact of diabetes on the cardiovascular system The relationship between diabetes and cardiovascular system disease has long been recognised. For a significant proportion of people the two conditions co-exist as part of a metabolic syndrome. Key points • Cardiovascular disease is the leading cause of death in people with diabetes. • The presence of diabetes increases the risks of coronary artery disease two- to threefold in men, and four- to fivefold in women when compared to people without diabetes. • In people with diabetes the risk of death, stroke, microvascular complications, and lower leg amputation are all associated with high blood pressure. For those with type 2 diabetes, intensive control of blood pressure is at least as effective as intensive control of blood glucose in reducing the impact of diabetes complications. • A 10 mmHg reduction in blood pressure reduces diabetes-related death by 15 percent (95% CI 12–18%), diabetes complications by 12 percent (95% CI 10–14%), microvascular complications by 12 percent (95% CI 10–16%) and myocardial infarction by 11 percent (95% CI 7–14%). • The evidence linking diabetes and cardiovascular disease has been comprehensively reviewed in Australia (see ‘Guidelines and reviews of evidence’). Suggested action points • Primary care organisations/PHOs offering free annual checks should review the prevalence of all cardiovascular risk factors for people in their diabetes register by ethnicity. If the prevalence of hypertension, abnormal lipids, micro-albumin (raised albumin:creatinine ratio) or smoking is higher in Maori or Pacific peoples, then specific quality initiatives to optimise treatment in these groups should be developed by the primary care organisation, hospital specialists, LDT and/or DHB management staff. • Hospitals should consider implementing systems to ensure that people admitted (for any reason) who have raised cardiovascular system (CVS) risk factors receive initial advice about reducing risk factors, assessment or treatment as appropriate. Risk factors and recommendations should be highlighted in discharge summaries or plans for primary care. • Hospitals should ensure that all people admitted with potentially diabetes-related diseases (and especially for CVS disease) are screened for diabetes, if the diagnosis has not already been made or recently excluded. Diabetes should also be reliably recorded in the clinical records and coded as a diagnosis in the national minimum dataset (NMDS) record for these admissions. Hospitals may consider (as part of their coding quality control systems) auditing a sample of clinical records to establish coding accuracy for diabetes. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 27 • After primary care organisations have reported on CVS treatment and risk factors by ethnicity, LDTs should review the information and consider recommendations to the DHB for improving the quality and effectiveness of cardiovascular treatment. The development of recommendations is likely to require specialist advice. • LDTs may recognise barriers to CVS risk factor control in people with diabetes. They will be well placed to ensure that all stakeholders in diabetes care are working to address those barriers and to monitor the effectiveness of those efforts through analysis of primary care data. • Community laboratories may be able to develop a formatted report for all diabetes and CVS results (as in Auckland) that may improve the integration of diabetes and cardiovascular risk factors in treatment decisions for primary care or hospital outpatient units. LDTs or DHB management staff should consult community laboratories to review the options for presenting clinical information more effectively. The impact of diabetes on the eyes Download the full paper in the impact of diabetes on the eyes Diabetes is associated with several eye conditions. Most important in causing avoidable loss of vision are its effects on the retina and the retinal blood vessels, causing a condition known as diabetic retinopathy. Diabetic retinopathy is present at diagnosis for a significant proportion of people with type 2 diabetes. In people with type 1 diabetes, it generally develops some years after diagnosis. Key points • Diabetes is widely accepted as the most common cause of avoidable loss of vision in people of working age in developed countries. • No country has reliable measures of the incidence of loss of vision from diabetes. International studies suggest that about 70 people in New Zealand become legally blind every year as a result of diabetes. • Diabetic retinopathy can be detected reliably by screening programmes. • Retinopathy screening with referral for laser treatment is effective in reducing loss of vision. It is either cost-effective or cost-saving to the health funder. • The uptake of screening, especially in high-risk populations, is relatively low in New Zealand and comparable countries. Uptake in high-risk groups is as important to maximise the effectiveness of screening programmes. • Technology for retinopathy screening is improving. For delivering screening to high-risk populations, there are several international models that use mobile cameras. • A National Eye Screening Quality Programme will be developed. Eye screening services will be required to enrol in this programme. • An upgraded national service specification has been developed and agreed. Suggested action points • Funding and performance staff of DHBs should work with LDTs to identify opportunities to improve screening uptake in high-risk groups, and establish targets for the DHB performance indicator. • Primary care organisations should review the information about eye screening in their diabetes registers, and work with eye screening services to identify geographic areas or population groups in which screening uptake is low. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 28 • Hospitals providing hospital-based eye screening should consider implementing systems that offer appropriate eye screening to people with diabetes who attend outpatients or are admitted for any reason. Such systems are particularly important for ‘hard to reach’ people from rural areas or people who find transport to hospital difficult. • Hospitals should consider a clinical audit of their cases of vitrectomy in people with diabetes with a view to establishing any opportunities for earlier intervention or improvements in eye screening or laser treatment. • Eye screening services should work with Local Diabetes Teams, primary care organisations and hospital diabetes specialists to agree on the guidelines and processes for referral into diagnosis and treatment. • The Ministry of Health will facilitate – with existing eye screening services – the development of a National Eye Screening Quality Programme. The impact of diabetes on the feet Download the full paper on the impact of diabetes on the feet Download graph of lower limb amputations in people with diabetes in New Zealand (PDF file) Foot complications in people with diabetes are a consequence of peripheral neuropathy, peripheral blood vessel disease, or a combination of both. Diabetic foot complications impact upon quality of life, causing pain and reduced mobility. In addition, they have the potential to lead to lower limb amputation. Key points • Diabetes-related foot complications are common and potentially disabling. • Nationally there are about 500 hospital admissions each year for lower limb amputations in people with diabetes. Funding for the inpatient costs of these cases alone is around $6 m per year. • The increased hospital admission rate for Maori and Pacific can be explained largely by differences in age distribution and socioeconomic deprivation. • Hospital admission rates vary for each DHB. These differences merit further investigation locally. • Treatment interventions have been reviewed extensively (see ‘Guidelines and evidence reviews’). In general, preventing foot complications using intensive glycaemic, lipid, and blood pressure control is likely to be more effective than high technology interventions aimed at preventing amputation in people with diabetes with very high-risk feet. • The importance of foot-care programmes, including patient education and podiatry, is emphasised. Suggested action points • With podiatry services primary care organisations should review the referral guidelines for people with high-risk feet. • Local Diabetes Teams may choose to recommend retailers trained (perhaps by a local podiatrist) in advising people with diabetes about shoes, foot protection (eg, insoles and socks) and skin care for the feet. • Primary care organisations, hospital diabetes services and other organisations providing formal education for people with diabetes should specify their foot-care education syllabus and any supporting education resources. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 29 Modelling and quality assurance Modelling diabetes There are major limitations to undertaking randomised, controlled trials to develop ways of improving the balance of comprehensive care for people with diabetes. Namely, such trials require a large sample size to provide the necessary statistical power, and extensive time to reach reliably measured end-points. The cost of these research trials can therefore be substantial. Given these limitations, mathematical modelling is a useful tool for estimating the future impact of diabetes and changes in diabetes care. With modelling, the impact of changes to the underlying variables can be investigated to estimate the benefits and the cost of different combinations of interventions. Modelling is inherently dependent on the accuracy of the underlying assumptions. Typically, people developing models change underlying assumptions or variables, and observe how sensitive the model is to the accuracy of these assumptions. The outcome of modelling, and of testing model assumptions, may be the identification of areas where further research is required. To quantify model assumptions more accurately, randomised controlled trials may then be used to gather that data. Mathematical models are therefore complimentary to, but not a replacement for, randomised controlled trials. There are also valuable opportunities for the use of models to explore the effectiveness of changes in different disease risk factors in reducing the future incidence and impact of diabetes. In this role, models provide decision support for setting priorities and targets. Ministry of Health model The Ministry of Health has developed a multistate Incidence, Prevalence, Remission, Mortality (IPRM) model for forecasting the incidence and future prevalence of diabetes. The forecast extends to 2011. The model has recently been updated with 2003-03 data. Reducing the incidence of diabetes is one aspect of the New Zealand Health Strategy priority statement for diabetes. However, given the variability in case detection (as described elsewhere in this toolkit), it is not practical currently to measure the incidence of type 2 diabetes directly. The Ministry of Health model therefore estimates incidence from the observed prevalence (in community studies) and observed all-cause mortality in people with diabetes. A C TI O N P O I N T F O R D H B S AN D L D TS A number of clinical indicators have been defined for diabetes against which DHBs will be required to report (for further detail see ‘Evaluating the quality and performance of diabetes services’). To access the denominator figure for the Case Detection indicator from the Ministry of Health model's estimate of expected diabetes prevalence please download the following Excel file. Evaluating the quality and performance of diabetes services For the Ministry of Health and DHBs to ensure that the quality of diabetes services is being maintained or improved over time, it is vital that services can be monitored in a robust and consistent fashion throughout the country. Monitoring the performance of services can be undertaken on a number of levels. Performance indicators have been developed for diabetes and are linked to monitoring contract performance for DHBs. Full detail of the indicators for diabetes, including those related to the measurement of DHB performance in 2001/02, is available from the Ministry of Health’s 2003 –04 Indicators of DHB performance New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 30 Download Final Indicators of DHB Performance 2003/04 (available on the Ministry of Health website) This section summarises these diabetes indicators. Indicator 1: Diabetes detection and follow up The indicator measures the effectiveness of the health care system in identifying the population with diabetes and monitoring the profile of risk factors for diabetic complications. This indicator is related to DHB performance measurement in 2003/04. NUMERATOR: (DATA SOURCE: DHB) The number of unique individuals with type 1 or type 2 diabetes on a diabetes register with a free annual check during the reporting period (calendar year) DENOMINATOR: (DATA SOURCE: MINISTRY OF HEALTH) The expected number of unique individuals to have type 1 or type 2 diabetes, as at the end of the reporting period. Indicator 2: diabetes management This indicator provides an estimate of the present and future impact of diabetes. HBA1c remains the most commonly used predictor of microvascular complications and diabetes control. It is one indicator of the effectiveness of the overall health care system in reducing the population attributable risk for diabetes complications. This indicator is related to DHB performance measurement in 2003/04/ NUMERATOR: (DATA SOURCE: DHB) The number of people with type 1 or type 2 diabetes on a diabetes register that have had a HBA1c blood test in the previous 12 months with an HBA1c equal or less than 8 percent, as at the end of the reporting period. DENOMINATOR: (DATA SOURCE: DHB) The number of people with type 1 or type 2 diabetes on a diabetes register that have had a HBA1c blood test in the previous 12 months, as at the end of the reporting period. Indicator 3: Retinal screening of people with diabetes in last two years Blindness from diabetic retinopathy is substantially preventable with effective screening and appropriate use of laser treatment. Retinopathy prevention is clearly established as cost-saving. This measure of screening uptake is responsive to short-term changes in the performance of the health care system. Reducing barriers to screening for those at highest risk, for example Maori and Pacific peoples, is a priority. This indicator is related to DHB performance measurement in 2003/04. NUMERATOR: (DATA SOURCE: DHB) The number of people with type 1 or type 2 diabetes on a diabetes register that have had retinal screening or an ophthalmologist examination in the last two years, as at the end of the reporting period. DENOMINATOR: (DATA SOURCE: DHB) The number of people with type 1 or type 2 diabetes on a diabetes register, as at the end of the reporting period. Diabetes service evaluation tool As well as collecting data against indicators, it is possible to assess the progress of DHBs toward improving diabetes health outcomes by monitoring statistics from the New Zealand Health Information Service, such as lower limb amputation rates. These measures, however, are not New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 31 highly sensitive to change in the short term and do not identify the origin of any problems that arise. To make possible more finely focused evaluation of diabetes services, the Ministry of Health has developed an interview-based evaluation tool. It can be used in conjunction with indicators to provide an overall view of diabetes service planning and provision in DHB areas. The Ministry of Health developed the evaluation tool to ensure nationally consistent evaluation that will enable comparison among DHBs and within each DHB over time. It is envisaged that DHBs or their shared support agencies will use the tool for evaluation and that the Ministry of Health will only be involved where particular problems or successes are identified in a given area. The design of the tool focuses strongly on encouraging DHBs and providers to strive for quality improvement. It is hoped that evaluation will enable DHBs to learn from the successes of others and thus avoid unnecessary duplication in the development of new services or systems. It is also intended that evaluation will encourage communication and cohesion among providers within a DHB area, in line with the theme of delivering services via seamless, multidisciplinary teams. The draft evaluation tool has been developed in consultation with the Waikato DHB. A pilot evaluation has been undertaken with providers and consumers within that area. The Ministry of Health will undertook a further pilot evaluation in the Whanganui DHB area during 2001/02 before releasing the final evaluation tool to DHBs for implementation. Download evaluation tool New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 32 APPENDIX 1: Glossary of terms and abbreviations Blood glucose: the main sugar that the body makes, mostly from carbohydrates, as well as from the other two elements of food – proteins and fats. Glucose is the major source of energy for living cells and is carried to each cell through the bloodstream. BMI: body mass index. It is a measure of body weight that also takes account of a person’s height. Expressed as weight (in kg) divided by the square of height (in metres). Desirable: 20–25, overweight >25, obese >30. Cardiovascular disease (CVD): disease of the heart or vessels of the circulation. Coronary heart disease: also known as ischaemic heart disease. DHB: District Health Board. Diabetes mellitus: a disease involving a disturbance of metabolism, the underlying cause of which being the defective production or action of the hormone insulin. There are several manifestations of the disease, the most common being type 1 and type 2 (see below). Diabetologist: a specialist doctor who sees and treats people with diabetes mellitus. Dietitian: an expert in nutrition who helps people with special health needs plan the kinds and amounts of foods to eat. End-stage renal failure: the final phase of kidney disease; treated by dialysis or kidney transplantation. Epidemiology: study of the distribution and determinants of health-related states or events in specified populations. Gangrene: the death of body tissue. It is most often caused by a loss of blood flow, especially in the legs and feet. Goal: a general aim for which to strive. HbA1c: a blood test used to measure glycosylated haemoglobin levels which indicate glycaemic control. HDL/LDL: high-density lipoprotein and low-density lipoprotein make up cholesterol. The levels and ratios of HDL and LDL are predictors of cardiovascular disease. Health status: a set of measurements that reflect the health of populations. The measurements may include physical function, emotional wellbeing, activities of daily living. Hyperglycaemia: elevation of blood glucose. Over an extended duration it is associated with the development of diabetes complications. Hypoglycaemia: a low level of blood glucose. Associated with an elevated level of insulin in insulin-dependent diabetics, it can lead to performance changes, but is not always symptomatic. Incidence: the number of new cases or deaths in a given period in a specified population. Insulin: a hormone that helps the body use glucose (sugar) for energy. The beta cells in the pancreas (in areas called the Islets of Langerhans) make the insulin. When the body cannot make enough insulin on its own, a person with diabetes can inject insulin made from other sources. Intersectoral: between sectors. Intervention: a specific prevention measure or activity designed to meet a programme objective. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 33 Intrasectoral: within a sector. LDT: Local Diabetes Team. A local group of stakeholders in diabetes care and prevention. Lipid: a term for some forms of fat. Ketoacidosis: A serious condition caused by an accumulation of ketoacids in the blood resulting from the body deriving energy from non-glucose sources during hyperglycaemia. Usually seen in type 1 diabetes, ketoacidosis can lead to coma if not immediately treated with insulin. Macrovascular complications: diabetes complications from large blood vessel disease. Includes coronary heart disease, stroke, peripheral vascular disease, hypertension. Maori: indigenous people of New Zealand. Microvascular complications: diabetes complications from small blood vessel disease; includes retinopathy (damage to eye), nephropathy (damage to kidneys), neuropathy (damage to nerves) Morbidity: illness. Mortality: death. Nephropathy: disease of the kidneys caused by damage to the small blood vessels or to the units in the kidneys that clean the blood. People who have had diabetes for a long time may have kidney damage. Neuropathy: disease of the nervous system. Many people who have had diabetes for a while have nerve damage. The most common form is peripheral neuropathy, which mainly affects the feet and legs. Nerve damage in the feet and legs causes diabetic gangrene. Obesity: when people have 20 percent (or more) extra body fat for their age, height, sex and bone structure, fat works against the action of insulin. BMI > 30 (see BMI). Objective: the end result a programme seeks to achieve. Ophthalmologist: a doctor who sees and treats people with eye problems or diseases. Ottawa Charter: the Charter developed and adopted by the first International Conference on Health Promotion held in Ottawa, Canada in November 1986. This Charter defines health promotion as the process of enabling people to increase control over, and to improve, their health. Health promotion action means building healthy public policy, creating supportive environments, strengthening community action, developing personal skills, and reorienting health services. Overweight: body weight that is above the recommended level, due to increased body fat. 25 < BMI > 30 (see BMI). Pacific peoples: the population of Pacific Island ethnic origin (eg, Tongan, Niuean, Fijian, Samoan, Cook Islands Maori and Tokelauan), incorporating people born in New Zealand as well as overseas. Podiatrist: a health professional who treats and takes care of people’s feet. Prevalence: the number of instances of a given disease or other condition in a population at a designated time. Prevalence includes both new (incidence) and existing instances of a disease. Retinopathy: a disease of the small blood vessels in the retina of the eye. Risk factor: an aspect of personal behaviour or lifestyle, an environmental exposure, or an inborn or intended characteristic that is associated with an increased risk of a person developing a disease. Target: an intermediate result towards the objective that a programme seeks to achieve. New Zealand Health Strategy • DHB Toolkit: Diabetes • Edition 1 34 Treaty of Waitangi: the founding document of New Zealand. Type 1 diabetes: Otherwise known as insulin-dependent diabetes mellitus (IDDM), type 1 diabetes is found most often in childhood, with secondary peaks in early and late adulthood. It is characterised by rapid onset of clinical symptoms and requires prompt medical treatment and regular use of insulin for survival. It is also termed juvenile-onset diabetes. Type 2 diabetes: Otherwise known as non-insulin-dependent diabetes mellitus (NIDDM), type 2 diabetes is found primarily in adults and which accounts for most cases of diabetes. It is characterised by a gradual onset of symptoms. It is also termed mature-onset or adult diabetes. Urologist: a doctor who sees people for treatment of the urinary tract and for treatment of the (male) genital organs. 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