State of the world’s children with diabetes

Daneman D. State of the world’s children with diabetes. Pediatric Diabetes 2009: 10: 120–126. ‘Insulin is not a cure for diabetes, it is a treatment.’ Frederick Banting, Nobel Prize Address, 1925 The discovery of insulin at the University of Toronto in 1922 remains one of the sentinel milestones in biomedical research: almost immediately, type 1 diabetes as we know it today went from being a uniformly fatal disorder to one with decreasing morbidity and mortality at disease onset but with important long-term ramifications 1. The lives of two youngsters who received insulin in 1922, Leonard Thompson and Elizabeth Hughes, illustrate the enormous variability in outcome of people with type 1 diabetes in the ‘insulin era’. Both of these young teens were dying from type 1 diabetes when they received early insulin preparations. On 11 January 1922, 14-yr-old Leonard Thompson was the first to receive injections of insulin (‘7.5 cc of McLeod’s serum into each buttock’ according to his medical chart). He died 13 yr later at age 27 yr of the chronic complications of diabetes. Elizabeth Hughes, also aged 14 yr, came from Boston to be treated by Frederick Banting. She wrote to her mother of the ‘unspeakably wonderful’ effects of insulin on her health. Elizabeth lived 59 more years dying at the age of 73 yr. From the early days of insulin discovery and availability until about the mid-to-late 1970s, pediatricians and pediatric diabetologists had a very limited view of diabetes, the vast majority being because of juvenile diabetes (which changed into insulin-dependent diabetes mellitus and now into type 1 diabetes), with only a few ‘other types’. Over the past 30 yr, diabetes in childhood has become much more complicated: (i) the emergence of the childhood obesity ‘epidemic’ has begun to uncover increasing numbers of youth with type 2 diabetes, especially in high-risk ethnic groups; (ii) the presence of insulin resistance associated with obesity superimposed on type 1 diabetes produces what some have called ‘double diabetes’; and (iii) recently, magnificent advances have been made in defining the molecular basis of both neonatal diabetes and some of the conditions previously labeled MODY or maturity diabetes in the young, now more appropriately termed monogenic diabetes (Fig. 1) 2. Classification of diabetes in youth. MODY, maturity diabetes in the young. © 2002 American Diabetes Association From Diabetes Care®, Vol. 25, 2002; 731-736. Reprinted with permission from The American Diabetes Association. This review will focus on the global issues of type 1 diabetes in youth addressing the magnitude of the problem as well as some of the dilemmas and responsibilities that confront health care professionals committed to the care of children with diabetes. I will consider these in the context of the Ecological Perspectives Model, which postulates that health care outcomes depend on factors in five domains: societal, community, institutional, interpersonal, and intrapersonal 3. It is my hypothesis that the outcome of youth with type 1 diabetes is very much dependent on the macro- (societal and community) and micro- (institutional, interpersonal and intrapersonal) environments in which they ‘find’ themselves (Fig. 2). Some of these are predetermined and others modifiable. This review assumes that our approach to the treatment of type 1 diabetes is informed by the findings of the landmark Diabetes Control and Complications Trial (DCCT) and its long-term follow-up and the Epidemiology of Diabetes Interventions and Complications (EDIC) 4-6 (i) that there is a close, somewhat curvilinear relationship between the glycemic control achieved and the onset and progression of both microvascular and macrovascular complications, and (ii) that the level of control early in the course of the diabetes influences long-term outcomes, a phenomenon termed ‘metabolic memory’. As a barometer of success, I will use the Declaration of Kos, 1993, as the yardstick because this was the ambitious articulation of the International Society for Pediatric and Adolescent Diabetes’ (ISPAD) targets for the year 2000 (Table 1). Have we been successful or are we still far off the mark? 7. Five domains of the Ecological Perspectives Model that predict health care outcomes. These are divided into macroenvironments and microenvironments. The Diabetes Atlas published in 2007 by the International Diabetes Federation (IDF) provides the most up-to-date statistics of type 1 diabetes in youth under age 14 yr 8. Of the world’s 1.8 billion children in this age-group, approximately 440 000 have type 1 diabetes, representing a prevalence of 0.02%, with about 70 000 new cases diagnosed annually and an average annual increment in incidence of 3%. Figure 3 demonstrates the annual incidence of type 1 diabetes in countries around the world: this varies from <4/100 000 population in much of Asia and Central and South America to >20 in Scandinavia (Finland remains the highest with >50), Canada, the UK, Australasia and Kuwait. The incidence rates in most African countries remain unknown but are likely still quite low. Of note, these incidence rates almost exactly parallel the life expectancy rates at birth of United Nations members states also published in 2007, suggesting that type 1 diabetes is a disorder of modern society (Hygiene versus Accelerator Hypothesis?) 9. The rapid increase in incidence of type 1 diabetes in certain populations suggests the role of environmental factors rather than genetic drift, for example the incidence in Kuwait has increased from <4 to >20/100 000 since the end of the first Gulf War in 1991. The difference in incidence of type 1 diabetes between two genetically identical, but socioeconomically disparate societies, is further testimony to the potential role of environmental factors, for example Finland vs. Russian Karelia 10. Incidence rates of type 1 diabetes in children-0–14 years (cases per 100,000 population per year). Diabetes Atlas third edition © International Diabetes Federation 2006. These changing incidences of diabetes demand that at least part of our research into etiology includes populations at both ends of the incidence spectrum and especially those in whom diabetes becomes much more prevalent when they migrate to higher incidence areas, for example individuals from the Horn of Africa. Furthermore, even though incidence rates in areas such as South-East Asia remain low, the actual number of children with diabetes is considerable, given the large population base. Statistics from the IDF suggest that in many regions of the world, precious little funding is available from local governments for direct support of diabetes care. There is a clear need for training of health care professionals as well as for the affordable availability of insulin and testing equipment in these underserviced areas 2. The supply of insulin and blood or urine glucose testing equipment into remote areas of the world remains uneven. This is especially problematical in parts of Africa. In an era when limitless supplies of insulin can be produced by recombinant DNA technology, its unavailability to any child with diabetes ought to be intolerable. The barriers to availability include cost, quality of the insulin products being provided, transport to remote locations, lack of critical mass of individuals with diabetes in these regions, and in some cases, lack of political will 2. It is tragic that in 2008, the most common cause of death in youth with type 1 diabetes globally is simply the lack of access to insulin. In the poorest parts of the world, insulin and testing equipment are so expensive that families must choose between insulin for one child and starvation for the other children or inevitable death of the child with diabetes so that the rest of the family can survive. It has been estimated, for example, that the life expectancy of a child with type 1 diabetes in rural Mozambique is as few as 7 months. It is the responsibility of governments, international aid agencies, and pharmaceutical companies to ensure that these tragedies be averted. One company, NovoNordisk, has pledged to provide insulin at 20% cost to the 50 poorest nations, of which at least 33 have accessed this program. The following sections highlight some of the factors in each domain of the Ecological Perspectives Model that impact on the outcome of children with type 1 diabetes. This cannot and does not represent an exhaustive listing of all the potential influences on outcome. The enormous discrepancy between developed and developing countries is starkly defined by the balance between ‘visible’ and ‘hidden’ threats to child health. In much of the developing world, this balance is overwhelmed by poverty, malnutrition, and the multiple infections including HIV/AIDS, tuberculosis, and malaria, while the problems of type 1 diabetes and childhood obesity remain relatively less evident. This is especially true of subSaharan Africa. In developed countries, the new threats of overnutrition and inactivity are much more evident, while underprivilege or disadvantage (neglect, poverty, handicap, and chronic disease) remain an issue in most societies, although relatively hidden in more affluent regions. How then does one start to address the issues of type 1 diabetes in the developing world? These governments are often overwhelmed with not only the issues of poverty, malnutrition, and widespread infectious disease, but also regional conflicts suck up much of the resources necessary to fund national health care projects. One solution proposed by Professor Francois Bonnici of the University of Cape Town is to ‘identify AND resource individual physicians who have the passion for caring for children with diabetes’ (personal communication). With relatively limited resources, many have been able to establish networks of care and build on what to me are the five fundamental requirements for diabetes care: Availability of food and clean water; Availability of insulin; Availability of urine and/or blood testing equipment (the latter is much more expensive in fact than the insulin, even in developed countries); Prevention of both diabetic ketoacidosis (DKA) and hypoglycemia; Protection against harm. There is a more than fivefold difference in the incidence rates of DKA at disease onset (from 15–20% in Sweden and Canada to over 70% in parts of Africa and Asia) in different countries around the world (inversely proportional to the incidence of diabetes in that region) and a more than 40-fold difference in DKA-related mortality reported (from 0.15% in Canada to about 4–6% in Sudan and Ethiopia) 11. Campaigns have begun in many countries to raise awareness of diabetes and to prevent DKA. These are largely modeled on the highly successful program in Parma, Italy, where incidence rates of DKA at disease onset fell from 78% to under 12.5% over a 6-yr period 12. Because many countries are either unable to unwilling to address the issues of diabetes in childhood, a number of volunteer groups have developed to raise funds for supplies and services for these children. For example, Life for a Child, a project of the IDF run by Dr Graham Ogle in Sydney now supports over 900 children with diabetes in 17 countries 13: Azerbaijan, Bolivia, Congo, Ecuador, Fiji, India, Mali, Nepal, Nigeria, Papua New Guinea, The Philippines, Rwanda, Sri Lanka, Sudan, Tanzania, Uzbekistan, and Zimbabwe. This program meets the children’s immediate needs (insulin, syringes, monitoring, and education), builds local capacity, and lobbies governments to establish sustainable solutions. Ron Raab, also Australian, heads Insulin for Life, which is a not-for-profit organization that collects and distributes insulin and other diabetes supplies that would otherwise be wasted 14. These superb humanitarian efforts are deserving of our attention and support. The approach to childhood diabetes has differed from one country to another. In Italy, for example laws enshrine the rights of children with diabetes to excellent care in diabetes centers; in the USA, there is a law ensuring access of children with chronic diseases to safe care in the school system; in the province of Ontario, Canada, recent legislation provides pumps and supplies to those with type 1 diabetes wishing to use this approach to management. Many other examples exist. In some countries, national surveillance registries exist, for example in Germany and Scotland, to allow diabetes centers to benchmark against one another. In Ontario, Canada, where there is a single payer province-wide health care system, the Network of Ontario Pediatric Diabetes Programs has been established. This includes 5 tertiary and 29 secondary multidisciplinary health care teams that ensure as uniform care as possible to the almost 7000 children in the province with diabetes and the 750–900 who develop type 1 diabetes each year. Staffing of diabetes centers differs enormously around the world with consensus staffing complements in different countries. In the UK and Sweden, for example, there is one diabetes nurse specialist per 70–100 children with type 1 diabetes, compared to one per 200–250 in the USA and Canada. Information on staffing of diabetes centers in the developing world is largely lacking. Through its Africa Initiative, ISPAD has begun to attempt to address care of childhood diabetes in Africa. The Hvidore Study Group has provided convincing data over the past 13 yr that outcomes in children with type 1 diabetes differ between diabetes centers around the world 15-17; however, the reasons for these differences remain elusive. Some of the factors associated with better outcomes (defined by mean A1c levels) include Availability of a 24-h hotline to assist patients and their families with urgent needs; Clear and lower targets for glucose and A1c; Greater frequency of visits with the diabetes physician; Balanced approach to parental involvement: avoidance of extremes of neglect and over-dependence; Children from immigrant (or minority status), lower socioeconomic status, and single-parent families tend to have higher A1cs. It is likely that institutional attitudes to both the dietary management and the incorporation of physical activity into the treatment regimen also impact on these outcomes. Of note, clinic/center ranking in terms of A1c means has remained relatively stable since inception of the series of studies in 1995. In addition, there has been a close correlation demonstrated between mean A1c levels in the early stages of the diabetes (first 3 yr) and those later in the course (beyond 3 yr). This suggests that there may be an important impact of the initial management (both education and treatment goals) on later outcomes, emphasizing the importance of a good start to diabetes management. In this section, the focus is on three factors: attachment theory, quality of life studies, and the profile of youth in chronic poor metabolic control. Ciechanowski et al. 18 have studied attachment theory in adults with diabetes, and, in a two-by-two design, have shown that there is a strong interaction between the patient’s ‘model of self’ and ‘model of other’ with significant impact on A1c levels (Fig. 4). Subjects falling into the ‘Secure’ attachment style had, on average, the lowest A1c levels, those with ‘Dismissive’ the highest, and ‘Preoccupied’ and ‘Fearful’ the intermediate levels. These data underline the importance of the relationship of the individual with diabetes and his/her health care team and other health care providers and family members. Attachment style categories and model for self and other [Ciechanowski et al. 18]. In a large multinational cohort of teens with type 1 diabetes, the Hvidore Study Group demonstrated both a strong relationship between quality-of-life measures and metabolic control (A1c) and a deterioration in the adolescents’ perceived quality of life with progression through the teen years, perhaps more prominent in girls than in boys 16. In the and health care professionals in their care perceived a decreasing of diabetes at the very the quality of This suggests that as and health care providers more of the responsibility for to the the teens not to his new responsibility in the most in an teens than with poor metabolic control defined by A1c levels for more than we have common intrapersonal and interpersonal barriers to good metabolic most often multiple in the teen intrapersonal health issues were in more than of the teens including and in the majority of the girls or and/or in about and and in of was in about a or attention problem in but teen had an in about their diabetes. barriers or parental support in almost family in single-parent health issues in one or both and in This the strong in these Interventions in these youth have been successful in metabolic control into the The International Insulin has proposed that responsibility for ensuring good diabetes care globally be between many and agencies, and The following are the of their (i) International and must childhood diabetes as a health problem in developing countries and and This especially to increasing insulin and testing equipment availability to those who cannot (ii) governments in developing countries be to to the of diabetes in (iii) governments in developed countries must address the problem of diabetes in developing countries early it becomes The control of insulin, other and for the world’s This humanitarian that the of such and include childhood diabetes in the of important threats to child health globally and with It is clear that the of the Declaration of Kos, 1993, to address global in childhood diabetes care by the year 2000 has far has been made on many diabetes has to receive the global attention it United Nations and are available and are insulin and testing equipment to more children. the discovery of insulin in 1922, there have been a number of important milestones in research that have the outcomes for children with type 1 diabetes, including in insulin of blood testing and of surveillance and early in long-term and multinational research groups and Trial to diabetes in the at are to prevent diabetes and the new age of molecular and of advances still to that have the potential to diabetes care. 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