Pediatric Diabetes. The Global Burden of Youth Diabetes: Perspectives and Potential A Charter Paper

Transcription

1 Peiatric Diabetes Volume 8 Supplement 8 The Global Buren of Youth Diabetes: Perspectives an Potential A Charter Paper Authors Henk-Jan Aanstoot DIABETER, Centre for Peiatric an Aolescent Diabetes Care an Research Rotteram,The Netherlans Barbara J. Anerson Diabetes Care Centre,Texas Chilren s Hospital Houston,Texas, USA Denis Daneman The Hospital for Sick Chilren Toronto, Canaa Thomas Danne Diabetes Centre for Chilren an Aolescents, Kinerkrankenhaus Auf er Bult Hannover, Germany Kim Donaghue The Chilren s Hospital at Westmea Westmea,Australia Francine Kaufman Centre for Diabetes, Enocrinology an Metabolism Chilren s Hospital Los Angeles, California, USA Rosangela R. Réa Hospital Infantil Pequeno Principe Curiba, Brazil Yasuko Uchigata Tokyo Women s Meical University School of Meicine Tokyo, Japan This supplement was supporte by an unrestricte eucational grant from Novo Norisk X(200710)8:05+8;1-V

2 BLACKWELL MUNKSGAARD 1 Rosenørns Allé, DK 1970 Freeriksberg C Denmark ISSN X Copyright Peiatric Diabetes Blackwell Munksgaar, Copenhagen

3 Peiatric Diabetes Volume 8 Supplement 8 Contents Preface Introuction from the Chair Eitor s Note Declaration of Kos Executive Summary Chapter One: Epiemiology Chapter Two: Organization of care Chapter Three: Psychosocial aspects Chapter Four: Socioeconomic aspects Acknowlegments Appenices I Components of the initial visit an continuing visits II Glossary

4 Peiatric Diabetes 2007: 8 (Suppl. 8): 4 All rights reserve # 2007 International Diabetes Feeration (IDF) Peiatric Diabetes Preface It is a singular tragey that, espite the emergence in recent years of increasingly effective strategies for the metabolic/glycaemic control of type 1 an type 2 iabetes mellitus, this isease continues to exact a terrible toll. Perhaps no group better exemplifies the iabetes crisis gripping both evelope an eveloping nations toay than the chil. Chilren an aolescents with iabetes represent society s most vulnerable population an it is inee a tragey that young lives continue to be lost to a isease for which aequate management tools an knowlege exist. This Charter Paper has been evelope as part of the International Diabetes Feeration (IDF) ÔUnite for Diabetes campaign, which seeks to raise awareness of iabetes an stimulate action to help minimize its impact. This Charter Paper has been evelope by a group of experts working in close association with the Unite for Diabetes Working Group on Special Populations. Among the goals of Unite for Diabetes was to create an pass a Resolution by the Unite Nations (UN) calling for global awareness an action on iabetes. This Resolution passe unanimously in the General Assembly of the UN on December 20, 2006, representing an important step towars better care for everyone with iabetes. From the preparation to the celebration of this UN Resolution on Diabetes, it is now time to act. It is our sincere wish that The Global Buren of Youth Diabetes: Perspectives an Potential will become an agent of change. By bringing together, for the first time, a comprehensive portrait of the worl of chil an aolescent iabetes, we seek to motivate health systems aroun the worl to o more for their young citizens touche by type 1 an type 2 iabetes. Each chapter conclues with a series of tangible recommenations that we sincerely hope will inspire stakeholers in the iabetes community to avocate for positive change. Progress is possible not in the future but toay, using available resources an infrastructure. Our chilren eserve nothing less. In closing, it is important to mention that the goals of IDF for improving the lives of chilren an aolescents with iabetes join with those of a number of committe organisations. Fourteen years ago, experts from The International Society for Peiatric an Aolescent Diabetes (ISPAD) gathere to evelop the Declaration of Kos a seminal work containing pleges to work to the following objectives by the year 2000: To make insulin available for all chilren an aolescents with iabetes To reuce the morbiity an mortality rate of acute metabolic complications or misse iagnosis relate to iabetes To make age-appropriate care an eucation accessible to all chilren an aolescents with iabetes, as well as to their families To increase the availability of appropriate urine an bloo self-monitoring equipment for all chilren an aolescents with iabetes To evelop an encourage research on iabetes in chilren an aolescents aroun the worl To prepare an isseminate written guielines an stanars for practical an realistic care an eucation of young people with iabetes an their families, emphasising the crucial role of healthcare professionals, an not just physicians, in these tasks aroun the worl While these goals have not yet all been attaine, they continue to represent guiing principles for the care of young people with iabetes. Sincerely, Professor Martin Silink Presient International Diabetes Feeration 4

5 Peiatric Diabetes 2007: 8 (Suppl. 8): 5 All rights reserve # 2007 International Diabetes Feeration (IDF) Peiatric Diabetes Introuction from the Chair July 2007 As a peiatric iabetologist I spen my professional life attening to young persons with iabetes. I am constantly heartene by the etermination, positive attitue an wisom beyon their years emonstrate by the chilren an their families in my center. Despite the issues, inconveniences an concern cause by their conition, these young people bring a refreshingly positive attitue through my oors each ay. When Martin Silink aske me to Chair the Youth Charter project I was immeiately excite by this unique opportunity to create a publication that can motivate positive change for young people with iabetes, in countries on every continent. This ocument this chance to evolve from charter to change is the result of a great eal of har work from a number of iniviuals an organizations. In aition to the International Diabetes Feeration, I woul like to acknowlege the International Society of Peiatric an Aolescent Diabetes (ISPAD) for their contributions to the Youth Charter. We were especially grateful to collaborate with past an present ISPAD boar members for the perspective they brought on behalf of an organisation that works effectively on the avancement of care, avocacy an science of iabetes in youth. From the ISPAD Declaration of Kos 14 years ago, to the cutting ege clinical an scientific initiatives, ISPAD is truly making a ifference. It is for these reasons that we are particularly prou that ISPAD has electe to enhance the voice of the Youth Charter by enorsing its aims an recommenations. Henk-Jan Aanstoot Rotteram, Netherlans 5

6 Peiatric Diabetes 2007: 8 (Suppl. 8): 6 All rights reserve # 2007 International Diabetes Feeration (IDF) Peiatric Diabetes Eitor s Note Throughout this ocument, the wors Ôchil an Ôchilren have been use for the sake of clarity an economy. These terms will cover the age range from infancy through chilhoo an into young aulthoo, using a cut-off point of 18 years. The age range of the chilren iscusse in the various stuies use to illustrate the Charter will be specifie where relevant. Throughout this ocument, the term Ôiabetes has been use. It refers to iabetes mellitus in all cases. Type 1 an type 2 iabetes mellitus are inclue, an iscusse iniviually or together as relevant. 6

7 Peiatric Diabetes 2007: 8 (Suppl. 8): 7 All rights reserve # 2007 International Diabetes Feeration (IDF) Peiatric Diabetes International Society for Peiatric an Aolescent Diabetes (ISPAD) Declaration of Kos On September 4, 1993, on the Islan of Kos, the members of the International Stuy Group of Diabetes in Chilren an Aolescents (ISGD), assemble at their 19th annual international scientific meeting an in the process of transforming ISGD into the International Society for Peiatric an Aolescent Diabetes (ISPAD), renewe their Hippocratic oath by proclaiming their commitment to implement the St Vincent Declaration to promote optimal health, social welfare an quality of life for all chilren an aolescents with iabetes aroun the worl by the year They took this unique opportunity to reaffirm the commitments by iabetes specialists in the past an, in particular, unanimously plege to work towars the following: To make insulin available for ALL chilren an aolescents with iabetes To reuce the morbiity an mortality rate of acute metabolic complications or misse iagnosis relate to iabetes mellitus To make age-appropriate care an eucation accessible to ALL chilren an aolescents with iabetes, as well as to their families To increase the availability of appropriate urine an bloo self-monitoring equipment for ALL chilren an aolescents with iabetes To evelop an encourage research on iabetes in chilren an aolescents aroun the worl To prepare an isseminate written guielines an stanars for practical an realistic care an eucation of young people with iabetes an their families emphasizing the crucial role of healthcare professionals an not just physicians in these tasks aroun the worl 7

8 Peiatric Diabetes 2007: 8 (Suppl. 8): 8 9 All rights reserve # 2007 International Diabetes Feeration (IDF) Peiatric Diabetes Executive Summary Less than one-fifth of the people in the worl who are iagnose with iabetes receive the level of care require to maintain optimal health an quality of life. With the incience of both type 1 an type 2 iabetes increasing at an alarming rate, this is a istressing statistic. Despite the existence of effective national an international guielines, too few chilren achieve the appropriate levels of care. Effective iagnosis an care for chilren with iabetes is no less than manatory. Diabetes care for youth must be compliant with the Unite Nation s Convention on the Rights of the Chil, wherein it is recognize that the chil is entitle to enjoyment of the highest attainable stanar of health an to facilities for the treatment of illness an rehabilitation of health. This ocument aresses key aspects of iabetes, its care an the costs of care in youth uner the heaings of Epiemiology; Organization of Care; Psychosocial Aspects; an Socioeconomic Aspects. The author s goals are to create a Ôstanar of care which, although epenent on local an national potential an possibilities, serves as a benchmark for improve care to chilren an aolescents. A recurring theme throughout these chapters is that knowlege of the goals of treatment of iabetes an the components of optimal iabetes care are now well establishe an well expresse in clinical practice guielines from numerous sources worlwie. The gap that exists between knowlege an practical implementation of this knowlege is confouning progress in elivering optimal care to all iniviuals with iabetes incluing chilren. The epiemiology of iabetes in chilren is shifting ramatically. An earlier onset of type 1 iabetes is now being observe, but it is the appearance an increasing incience of type 2 iabetes in young people, once the sole omain of the ault, that is particularly isturbing. The increase of iabetes is closely relate to socioeconomic an environmental factors together with a genetic influence. Overweight an obesity ue to a shifting balance an quality of foo intake an energy output is a primary moifiable risk factor. There is an enormous gap between knowlege an practice of optimal iabetes care, an a major factor in this gap is organization of care. The components of iabetes care being well establishe, it is clear that elivery of optimal care is the weak point in the process. Whatever the cause or etiology, without proper treatment iabetes is ealy an angerous to health. Its potential severity warrants timely an effective treatment. Delivery of care has a number of confouning variables incluing insufficient financial resources to fun specialise healthcare personnel an in some regions, treatments incluing insulin; inaequate eucation of people with iabetes an healthcare proviers to embrace the principles of optimal care; an lack of unerstaning of ecision makers of the priority represente by iabetes care ue to the impact on not only the iniviual but also society as a whole. The psychosocial impact of iabetes is largely a hien cost, but a cost that can uno even the best intentions for care. Young people with iabetes are particularly impacte by psychosocial issues because they are facing a future of living with iabetes at high risk if iabetes is not well controlle from the outset. Parents an other family members can also experience psychosocial impact from the ongoing stress associate with meeting the chil s aily stanars for care, an the price in human terms of poor care. The impact of iabetes on chilren has particularly serious consequences for the socioeconomic health of not only the iniviual but also of all nations ue to the compromises now an in the future for the chil s eucation, future prouctivity an contributions to society. Barriers to investment in iabetes care must be replace with informe investment base on an expane base of evience of the far-reaching effects an associate costs of iabetes in chilren. In the face of the significant proportion of chilren with iabetes who are not receiving effective care much less those who are never even iagnose it is an unfortunate fact that afforable an effective care 8

9 The Global Buren of Youth Diabetes: Perspectives an Potential is actually achievable. Ways nee to be foun to expan access to specialize multiisciplinary teams at clinic level in as many communities as possible an to facilitate elivery of care in uner service regions, thereby supporting broa-base implementation of optimal iabetes care strategies as evelope by iabetes centers of excellence. Healthcare ecision makers worlwie can utilize the finings from stuies to ientify gaps in elivery of care an evise country-specific strategies to aress shortcomings of every type (funing, eucation, resources, etc.) an brige these gaps to meet the nees of their citizens with achievable iabetes management programmes. Strategies to improve iabetes care nee to also transcen issues of eucation, early iagnosis an initiation of intensive treatment to take on primary prevention as an important priority. As there is not yet a cure for iabetes, it is of paramount importance that the barriers to optimal care of iabetes in chilren are aresse. For the chil newly iagnose with iabetes, it shoul simply be a part of that chil s life an not its efining characteristic. For all chilren an their families, the right to long-term health an quality of life can best be supporte with eucation an resources to live life well with iabetes an to prevent iabetes where possible. Finally, it is the author s hope that this Charter will provie the basis for much neee local, regional or country-wie improvements for chilren affecte by iabetes an their families. Using this Charter as a tool with which to effectively introuce basic, stanar or comprehensive care moels something that will require political will is among its goals. Conflicts of interest The authors have eclare no conflicts of interests. Peiatric Diabetes 2007: 8 (Suppl. 8): 8 9 9

10 Peiatric Diabetes 2007: 8 (Suppl. 8): All rights reserve # 2007 International Diabetes Founation (IDF) Peiatric Diabetes Chapter one Diabetes in chilren: epiemiology Challenges A iagnosis of iabetes in a chil has typically been assume to be type 1 iabetes, formerly classifie as juvenile iabetes. However, in the last two ecaes, type 2 iabetes, once known as ault-onset iabetes, is being iagnose with increasing frequency in chilren in countries aroun the worl. The rapily rising incience of both type 1 an type 2 iabetes in young people is clear evience that the Ôrules of iabetes epiemiology as we have known them are being broken. Type 1 is still the major form of iabetes in those uner 10 yr ol. It is precee by a angerous perio, incluing iabetic ketoaciosis (DKA), from which chilren continue to ie, as a result of ignorance an lack of eucation. The increasing incience of type 1 iabetes cannot solely be explaine by genetics; environmental factors are influencing those with a genetic preisposition. In aition, type 2 iabetes, while strongly linke to genetics, is certainly attributable to the causative factors of iet, lifestyle an environment. Both forms are clearly linke to genes an environment. Habits of low physical activity couple with high calorie, nutrient-eficient iets are becoming entrenche early in life. In both evelope an eveloping countries, common causative factors for both type 1 an type 2 iabetes appear to be converging uner lifestyle an environment. The fact that these are moifiable risk factors provies optimism an incentive to evelop an implement comprehensive eucation an intensive management strategies to provie optimal iabetes treatment while at the same time focusing on arresting the current tren through prevention. Introuction Epiemiology escribes patterns of isease by causation an geographical region, among other factors. Among evelope nations, type 1 iabetes mellitus is one of the leaing chronic iseases of chilhoo (1). Both type 1 an type 2 iabetes can occur in chilren an aolescents, although type 1 is in most countries still more common an in fact is still often referre to as chilhoo or juvenile-onset iabetes. Type 1 an type 2 iabetes present somewhat ifferent isease patterns an require ifferent management; people with type 1 iabetes require aily insulin, which is literally a life-saving treatment. Depening on clinical parameters an treatment success, iniviuals with type 2 iabetes may require insulin. Whether type 1 or type 2, all forms of iabetes pose potentially grave angers to health. In the 19th century, iabetes was uncommon an the incience of chilhoo iabetes was relatively low an stable until the mile of the twentieth century. There has been an upturn in the incience of type 1 iabetes in North America an northern Europe since the mi-1950s, a tren that is now observe in countries aroun the worl. The rise has been too rapi for the explanation to be purely genetic. The causes are not yet completely unerstoo, although various factors have been propose such as rapi growth in early chilhoo, early exposure to certain foo constituents (e.g. cow s milk hypothesis), enterovirus infection, chemicals an reuce exposure in early chilhoo to infective agents that contribute to evelopment of a healthy immune system (the Ôhygiene hypothesis ) (2). Antenatal risk factors associate with the evelopment of chilhoo obesity, type 2 iabetes an cariovascular isease inclue perinatal factors such as placental insufficiency an foo eprivation in early pregnancy, as well as parental history of overweight an maternal overweight uring pregnancy (3). Both babies that are small for gestational age an those who are large for gestational age have an increase risk of eveloping obesity, iabetes an associate cariovascular isease (3, 4). Initial breastfeeing of the infant appears to protect against obesity in later life (5). Other postnatal factors that influence risk of obesity inclue infant overnutrition an rapi weight gain uring the first few months of life (3). Recent ata inicate that among preschool chilren, current overweight an obesity are stronger eterminants of insulin resistance than birth weight (6). Significant ifferences in the seasonality of birth between chilren with iabetes an the general population have been observe in Britain, with a peak in early summer 10

11 an a trough in winter (7). Early exposure to cow s milk proteins, cereals, an heavy weight uring infancy has been implicate as risk factors for type 1 iabetes. Incience of iabetes is rising rapily in chilren The incience of both type 1 an type 2 iabetes is rising rapily in chilren. The incience of type 1 iabetes is increasing in chilren an youth by about 3% (range about 2 5%) per annum, with the greatest rate of rise in the uner 4-yr-ol age group (8). Type 2 iabetes was rare in this age group until recently, but the tren towars overweight an obesity is acting as a river to the evelopment of type 2 iabetes in youth, particularly after onset of aolescence. A rising incience of type 2 iabetes in aolescents in Japan was first reporte in 1990 (9). Further ata show that type 2 iabetes is now seven times more common than type 1 in Japanese chilren, an increase in incience of more than 30-fol over the past 20 yr, believe to be a function of changing iet an increasing obesity rates (10). Although certain ethnic groups such as South East Asians, Pacific Islaners, Hispanics, African-Americans an the Native North Americas (also calle Aboriginals or First Nations in Canaa an North American Inians in the USA) are known to be at high risk, the changing patterns are not confine to these groups. The incience is rising at a greater rate among immigrant populations. Type 1 iabetes, still the most prominent form of iabetes seen in chilhoo, is an autoimmune isease characterize by estruction of the insulin-proucing beta cells in the pancreas, leaing to total or near total insulin eficiency (11). Type 1 iabetes often presents clinically with clear symptoms such as weight loss, excessive thirst, urination an lethargy: ketoaciosis may be observe in the chil who has been experiencing these symptoms for some time before meical help is sought. The chil with type 1 iabetes will require lifelong insulin replacement. In type 2 iabetes, the major factor is insulin resistance; iabetes occurs when beta cells are no longer able to prouce enough insulin to overcome this resistance. Contributors to insulin resistance inclue genetic factors, obesity (itself at least partly genetically riven), reuce physical activity, high or low birth weight an infections. The implications of high birth weight, maternal obesity an gestational iabetes for evelopment of metabolic synrome in chilhoo are a current subject of research (12). Dietary changes such as greater consumption of high-fat, high-energy foos, lower-fiber an processe foos an foos prepare outsie the home are also believe to play a large part in the rapi increase in incience of type 2 iabetes that we have seen in recent years. The Global Buren of Youth Diabetes: Perspectives an Potential It can be ifficult to istinguish type 1 from type 2 iabetes in chilren an aolescents. Ientification of type 1 or type 2 can be supporte by the presence of beta cell-relate autoantiboies in type 1, but the absence of autoantiboies oes not rule out type 1 iabetes as they are lacking in 5 10% of people at iagnosis. Moreover, youth with type 2 iabetes frequently isplay islet autoantiboies an type 2 iabetes in the young may result from an interplay of insulin resistance an autoimmunity (13 15). Although chilren with type 1 iabetes are typically not overweight, the population of many countries is becoming more overweight. It is estimate that as many as a quarter of chilren with type 1 iabetes in these countries may be overweight at the time of iagnosis (16). This may influence the presentation of iabetes in young people. In aition, there is evience that type 1 an type 2 iabetes may even be one an the same isorer of insulin resistance; in the case of type 1, beta cell estruction precees problems in prouction an resistance, whereas in type 2, insulin prouction remains intact for a longer perio of time an resistance evelops on the basis of other (perinatal an weight epenent) cofactors (15). Table 1 shows the characteristic features of type 1 compare with type 2 iabetes in young people, as erive from the International Society for Peiatric an Aolescent Diabetes (ISPAD) Consensus Guielines for the Management of Type 1 Diabetes Mellitus in Chilren an Aolescents (2000) (17). In aition, there are several other less common forms of iabetes in eveloping countries, incluing fibrocalculous iabetes an malnutrition-relate iabetes, shown in Table 2. In a paper from Banglaesh that stuie chilren with iabetes uner the age of 18 yr, 30.4% ha type 1 iabetes, 29.6% ha fibrocalculous pancreatitis, 38.5% ha malnutrition-moulate iabetes an 1.6% of the chilren ha type 2 iabetes (18). There are also an increasing number of monogenic conitions associate with iabetes in youth (previously referre to as Maturity Onset Diabetes in the Young) or in the neonatal perio that have been recognize. When there is a strong family history of early onset iabetes suggestive of an autosomal ominant inheritance, monogenic forms shoul be seriously consiere, e.g. HNF-1 an 4 mutations, glucokinase mutation (19). Type 1 iabetes: current global ata In 2006, the number of chilren globally age 0 14 yr with type 1 iabetes was estimate by the International Diabetes Feeration to be , with an annual increase of 3% per annum an newly iagnose cases a year. More than one quarter of these newly iagnose cases come from South East Asia an more than one fifth from Europe. The Peiatric Diabetes 2007: 8 (Suppl. 8):

12 The Global Buren of Youth Diabetes: Perspectives an Potential Table 1. Characteristic features of type 1 compare with type 2 iabetes in young people Characteristics Type 1 Type 2 Age Throughout chilhoo Pubertal (or later) Onset Most often acute, rapi Variable: from slow, mil (often insiious) to severe Insulin epenence Permanent, total, severe Uncommon, but insulin require when oral hypoglycaemic agents fail Insulin secretion Absent or very low Variable Insulin sensitivity Normal Decrease Genetics Polygenic Polygenic Race/ethnic istribution All groups, but wie Certain ethnic groups are at particular risk variability of incience Frequency (% of all iabetes Usually 90%1 Most countries,10% (Japan 80%) in young people) Associations Autoimmunity Yes No Ketosis Common Rare Obesity No Strong Acanthosis nigricans No Yes Source: International Society for Peiatric an Aolescent Diabetes (ISPAD) Consensus Guielines for the Management of Type 1 Diabetes Mellitus in Chilren an Aolescents (17). increase in incience of type 1 iabetes has been observe in countries with both high an low prevalence, with an inication of a steeper increase in some of the low-prevalence countries. No region is exempt from type 1 iabetes (Fig. 1) (8). The increase is not reaily explaine by shifts in genetic susceptibility because it has happene so quickly, but the search continues for explanations. A 350-fol variation was observe between 1990 an 1994 among 100 populations worlwie in the incience of type 1 iabetes in chilren up to the age of 14 yr. The incience range from 0.1 per per annum in China an Venezuela to 36.8 per in Sarinia an over 40 in Finlan. The lowest incience was generally seen in China an South America. Eighteen of 39 European populations surveye ha an intermeiate incience of iabetes ranging from 5.0 to 9.99 per population. A very high incience, efine as greater than 20 per , was seen in Sarinia, Sween, Norway, Portugal, the UK, Canaa an New Zealan (20). European ata The EURODIAB 2000 survey contains ata from 44 centres representing most European countries. The ata cover new cases in chilren an aolescents up to the age of 15 yr between 1989 an In general, the incience rates are higher in northern an NW Europe an lower in southern, central an eastern Europe; this range is perhaps ue to ifferent exposure to infections or other environmental factors. The rates range from 3.2 per in Maceonia, 5.0 in Romania an 5.4 in Polan to 40.2 per in Finlan, 36.6 in Sarinia an 25.8 in Sween. Poole incience rates uring this perio show a 6.3% increase for chilren age 0 4 yr; 3.1% for chilren age 5 9 yr an 2.4% for those age yr (21). In southwest Englan, an overall crue incience rate of type 1 iabetes was observe of 14.9 per population in youth up to an incluing the age of 14 yr between 1975 an During this time there was a marke increase in iabetes in those age uner 5 yr, which is of concern because it can be ifficult to maintain goo glycaemic control in this age group, a crucial factor in minimizing the risk of evelopment of complications (22). Among chilren age 0 14 yr iagnose with type 1 iabetes an living in the city of Brafor, UK, there was an annual increase in incience of 6.5% in south Asians compare with an average annual increase in incience of 4.3% in all chilren (23). Data from the Mile East an Australasia Prospective ata collection in Kuwait between 1992 an 1997 showe an incience in chilren uner the age of 15 yr of 15.4 per in 1992, rising ramatically to 20.9 per yr later. The rise was particularly steep in those age 5 9 yr (24). Figures from New South Wales show that the agestanarize incience of type 1 iabetes among chilren up to the age of 14 yr rose by 28% between 1992 an By comparison, the total number of chilren in this age group rose by 0.5% (25). In China, ata collecte for chilren uner 15 yr of age from 22 centers showe an overall correcte incience of 0.51 per ; this was the lowest incience recore in the Worl Health Organization Multinational Project for Chilhoo Diabetes (DiaMon) project. There was a 10-fol ifference between the ifferent centers, with higher rates in the 12 Peiatric Diabetes 2007: 8 (Suppl. 8): 10 18

13 Table 2. Other specific types of isorers of glycemia International Society for Peiatric an Aolescent Diabetes (ISPAD) A. Genetic efects of b-cell function B. Genetic efects in insulin action Type A insulin resistance, leprechaunism, Rabson-Menenhall synrome, lipoatrophic iabetes, others C. Diseases of the exocrine pancreas Pancreatitis, trauma/pancreatectomy, neoplasia, cystic fibrosis, hemochromatosis, fibrocalculous pancreatopathy, others D. Enocrinopathies Acromegaly, Cushing synrome, glucagonoma, phaeochromocytoma, hyperthyroiism, somatostatinoma, alosteronoma, others E. Drug or chemical inuce Vacor, pentamiine, nicotinic aci, glucocorticois, thyroi hormone, iazoxie, beta-arenergic agonists, thiazies, ilantin, alpha-interferon F. Infections Congenital rubella, cytomegalovirus, coxsackie B4 G. Uncommon forms of immune-meiate iabetes Anti-insulin receptor antiboies, autoimmune polyenocrine synrome eficiencies I an II, Ôstiff-man synrome H. Other genetic synromes sometimes associate with iabetes Down s synrome, Klinefelter s synrome, Turner s synrome, Wolfram s synrome, Friereich s ataxia, Huntington s chorea, Laurence-Moon-Biel synrome, Myotonic ystrophy, Porphyria, Praer-Willi synrome Source: International Society for Peiatric an Aolescent Diabetes (ISPAD) Consensus Guielines for the Management of Type 1 Diabetes Mellitus in Chilren an Aolescents (17). north. By ethnic group, there was a sixfol ifference between the highest (Mongol) an lowest (Zhuang) inciences. Variations in eating habits an lifestyles coul explain some of this iversity but there may also be a genetic element. China is much more genetically iverse than Europe (26). DKA: a life-threatening but preventable complication DKA is the leaing cause of mortality (usually stemming from cerebral oeema) an morbiity in chilren with type 1 iabetes. DKA in chilren evelops quickly an is, much more than in aults, relate to severe morbiity an sequelae of associate meical complications. There is wie geographic variation in the frequency of DKA at iabetes onset: reporte frequencies range between 15 an 67% in Europe an North America an may be more common in eveloping countries. DKA at onset of type 1 iabetes is more common in chilren uner the age of 4 yr, chilren without a first-egree relative with type 1 The Global Buren of Youth Diabetes: Perspectives an Potential iabetes, an those from low incience countries, as well as those from families of a lower socioeconomic status (27). The escribe changing patterns of presentation of iabetes have also change the incience an severity of DKA in chilren (21). Type 2 iabetes in chilren an aolescents Recent ata inicate an escalating incience of type 2 iabetes in chilren an aolescents worlwie. Although type 2 iabetes use to be a conition in those over 40 yr of age, the increase an ecrease of onset-age now hits chilren even before their teens. Among the primary risk factors for type 2 iabetes are increase weight an lack of physical activity. Over the past ecae, there have been profoun changes in the quality, quantity an source of foo consume in many eveloping countries. Processe foo, for instance, typically offers greater caloric content but lower nutritional value, at a lower cost. An increasingly seentary lifestyle an limite physical an sporting activities in school also play a part in the evelopment of overweight an obesity. In aition, less well known factors play an important role such as sleep eprivation, factors that isturb enocrinological pathways, improve conitions of living (such as ambient temperatures in houses) an meicines (28). Worlwie, overweight an obesity affect an estimate 10 20% of chilren. Due to the fact that obesity once evelope is a chronic conition, there is thus an increasing tenency to evelop type 2 iabetes an cariovascular isease (29). The complex pathophysiology of type 2 iabetes is not limite to factors of weight an physical activity. Trens in type 2 iabetes are strongly relate to environmental factors, some of which are alreay in effect in the perinatal perio. Chilren with overweight or iabetic mothers are more likely to have iabetes themselves. The nature of foetal an infantile nutrition is associate with later evelopment of type 2 iabetes: poor nutrition at these stages of life is etrimental to the proper evelopment an function of the pancreatic beta cells an insulin-sensitive tissues, potentially leaing to insulin resistance uner the stress of obesity. The thrifty genotype hypothesis proposes that efective insulin action in utero results in ecrease foetal growth as a conservation mechanism but at the cost of obesity-inuce iabetes in later chilhoo or aulthoo (30). The prevalence of obesity is 50% higher among never-breastfe chilren compare with breastfe chilren, an the uration of breastfeeing is inversely correlate with the risk of evelopment of obesity (3). Most chilren with type 2 iabetes are overweight or obese at the time of iagnosis; ethnic backgroun is unerstoo to tie in to the propensity to evelop type 2 iabetes in chilren, thus a chil from a high-risk Peiatric Diabetes 2007: 8 (Suppl. 8):

14 The Global Buren of Youth Diabetes: Perspectives an Potential Fig. 1. Estimate number of cases of type 1 iabetes by region. Source: International Diabetes Feeration Worl Atlas of Diabetes (2006) (8). ethnic group such as South Asian or Pacific Islaner may evelop type 2 iabetes at a lower Boy Mass Inex than woul a chil of Caucasian backgroun. Unlike those with type 1 iabetes, polyuria, polyypsia an weight loss are usually absent or mil. Major risk factors in aition to overweight or obesity inclue a family history of type 2 iabetes, hypertension, lipi isorers or iagnosis of acanthosis nigricans or polycystic ovary synrome. The peak age of presentation is mi-puberty, coinciing with a peak increase in growth hormone secretion. This growth hormone tips the balance in iniviuals with a genetic preisposition to insulin resistance an environmental risk exposure (16). Recent ata on type 2 iabetes show increases in several parts of the worl: North American ata About 94% of chilren in the USA with type 2 iabetes were foun in one survey to belong to minority communities, an the mean age at iagnosis was yr. A substantial proportion of type 2 iabetes is estimate to be misclassifie, uniagnose or unerreporte. The most ramatic figures come from the Pima Inians in Arizona. In the years , the prevalence of type 2 iabetes was 22.3 per 1000 for yr ols an 50.9 per 1000 for yr ols. Between the years an , the prevalence increase four- to fivefol for both age groups. Among American Inians an Alaskan Natives age yr, the prevalence increase by 54% between 1988 an Among white an Hispanic populations of San Antonio, Texas, type 2 iabetes represente 18% of all new cases of iabetes from 1990 to 1997 (31, 32). Recently new ata from the USA became available from the SEARCH for Diabetes Youth Stuy Group (33). The overall incience was 24.3 (per patient years; previous stuy 16.5 in early 1990s) confirming the overall increase seen in other countries. Among chilren younger than 10 yr, most ha type 1 iabetes irrespective of their race or ethnicity, with the highest rates in non-hispanic white youth (18.6, 28.1 an 32.9 for the age groups 0 4, 5 9 an yr ol respectively). Even in aolescents from non-hispanic, Hispanic an African-American escent, type 2 iabetes was relatively infrequent, but high rates were foun in 15- to 19-yr-ol minority groups ( per ). These ata showe the continuous increase of iabetes among US youth an the imminent shift of type 2 iabetes towars younger age. In total, youth are iagnose with type 1 iabetes annually in the USA an 3700 with type 2 iabetes (33). The First Nations people of Canaa represent 3% of the country s population. By 1998, it was estimate that 10 20% of new cases of iabetes were presenting among these people (34). European ata Data from 2002 estimate that there were a total of chilren with iabetes in the UK at that time, an forecast that the incience of type 2 iabetes was likely to rise substantially if the UK followe the example of the USA. Accoring to these finings, type 2 iabetes was not limite to high-risk ethnic groups such as South East Asians (35). Australasian ata Data from Western Australia show an increase of 27% in the incience of type 2 iabetes in youth between 1990 an Fifty three per cent of these young people were of inigenous origin. Population-base recommenations inclue improving ietary intake 14 Peiatric Diabetes 2007: 8 (Suppl. 8): 10 18

15 an increasing physical activity, incluing activity uring school hours; these strategies shoul involve the whole family (36). The incience of type 2 iabetes is thought to be higher than that of type 1 iabetes among Japanese chilren. A programme has been in place since 1974 to collect early morning urine samples from schoolchilren. Testing has etecte a number of chilren who have type 2 iabetes but are asymptomatic: 84% of chilren with type 2 iabetes were 20% or more overweight, an 57% ha a family history of type 2 iabetes. Among primary schoolchilren, the incience is 0.78 per chilren, an among junior high schoolchilren, the incience rises to 6.43 per chilren (37). Similarly, a mass screening program for iabetes an proteinuria has been unerway for stuents in Taiwan, using urine testing an bloo testing as appropriate. The overall rate of newly ientifie iabetes, as reporte in 2003, was 12.0 per stuents, with consierably higher rates in those age yr compare with those age 6 9 yr. Compare with controls, those with type 2 iabetes ha a higher boy mass inex, higher bloo pressure, were oler an were more likely to have a family history of iabetes (38). A recent review of publishe ata testifies to the global sprea of type 2 iabetes in chilren an aolescents. The issue of type 2 iabetes is not limite to certain ethnic groups or to particular regions but has become almost universal. There appears to be a close relationship between rates of type 2 iabetes in aults an the eventual appearance of type 2 iabetes in aolescents. Therefore, attention to the epiemiology of type 2 iabetes in aults may help to preict the emergence of type 2 iabetes in aolescent populations, with implications for screening programs an obesity prevention programs (39). Screening for type 2 iabetes The Global Buren of Youth Diabetes: Perspectives an Potential Type 2 iabetes evelops in a graual but persistent manner. A iagnosis of iabetes is precee by a perio of glucose intolerance in which glucose levels increase but remain lower than guieline threshol levels. These threshol levels have been evelope in relation to aults, but are also use for chilren, as specific ata for this group are lacking. From stuies in aults it is known that there may be a significant time lag to the onset of type 2 iabetes. The average ault with iabetes has experience aberrant glucose values for 7 11 yr. During this perio, vascular isease with accompanying complications may have alreay evelope. Thus, it is of extreme importance to ientify both those at risk for iabetes (primary prevention) an those with iabetes as early as possible, preferably before complications arise an pathophysiological processes become irreversible (seconary prevention). Screening can be applie for primary prevention, but also has a role in seconary prevention. It is therefore important to screen for iabetes in chilren an youth at risk. A number of professional organizations aroun the worl, incluing the American Diabetes Association, recommen testing for type 2 iabetes in chilren over the age of 10 yr who are overweight (boy mass inex.the 85th percentile) an who have any two of the following risk factors: a family history of type 2 iabetes in a first or secon-egree relative; racial or ethnic high risk (such as American Inian, African-American or South Asian); or signs of insulin resistance or associate conitions. Several (inter)national guielines contain similar screening recommenations aime at primary or seconary prevention; it is important to apply such recommenations as they may reuce the buren of iabetes (40). Complications of iabetes in chilren As escribe in the previous paragraphs, goo iabetes care prevents the evelopment of complications (seconary prevention). Despite screening for iabetes an the availability of aequate treatment guielines, some people with iabetes (both type 1 an type 2) will unfortunately evelop both meical an psychosocial complications ue to lack of access to comprehensive care, inaequate practice of care routines, or lack of opportunity or ability to implement available care strategies into aily routines. The early onset of the isease in chilren places them at a higher risk to evelop such complications at an ever younger age. Complications are being seen at a younger age now that the onset of iabetes is occurring earlier. Thus, in the USA, 40% of chilren an aolescents with type 2 iabetes were observe to have microalbuminuria (MAU) after a iabetes uration of only 18 months; among Pima Inians iagnose with iabetes uring chilhoo, 22% ha MAU at iagnosis. Stuies in these special populations showe that (except for retinopathy) chilren have no protective or elaying factors that protect them from complications. On average, complications occurre after a similar uration than those in aults (41). The complications of iabetes can be very severe, leaing to early onset of cariovascular isease an premature eath. Other complications that are seriously etrimental to the health an quality of life of people with iabetes inclue blinness, kiney failure an neurological amage. Complications are not limite to meical concerns; psychosocial complications can prevent optimal iabetes care an the achievement of treatment goals. Diabetes care poses consierable emans on chilren Peiatric Diabetes 2007: 8 (Suppl. 8):

16 The Global Buren of Youth Diabetes: Perspectives an Potential an their families. In aition to the normal evelopmental challenges of chilhoo an aolescence, the aitional buren of iabetes, an especially intensive management, may be ifficult for many chilren to eal with. More intensive treatment coincies with increase psychological pressure on chilren with iabetes an family members. This may a to the evelopment of psychosocial complications such as ajustment problems, issues with self-esteem, epression, an particularly in aolescent girls, eating isorers. In one stuy in aolescents an young aults who ha iabetes since chilhoo, about onethir neee either psychological or psychiatric counselling after (on average) 15 yr following onset of their iabetes (42). Stuies from Sween showe that, espite the comprehensive care elivere, more than 50% of patients with chilhoo onset type 1 iabetes evelope etectable iabetes complications after an average 12 yr of iabetes. Inaequate glycemic control, incluing in the first 5 yr of treatment, accelerate this (43). A stuy reporte in 2006 showe that, of 1433 people with type 1 iabetes an 68 with type 2 iabetes, all uner the age of 18, those with type 1 iabetes ha a longer uration of isease (6.8 vs. 1.3 yr) an a higher meian glycate hemoglobin (8.5 vs. 7.3%). Significantly more people with type 2 iabetes were obese (56 vs. 7%). Retinopathy was observe in 20% of those with type 1 iabetes; MAU an hypertension were observe in 28 an 36%, respectively, of those with type 2 iabetes. These high rates of serious complications suggest that chilren as well as aults with type 2 iabetes shoul be screene for complications at the time of iagnosis. The ata also argue for screening of at-risk aolescents for type 2 iabetes because early treatment may avoi or reverse complications (44, 45). Clearly, prevention of complications is preferable to treatment of complications. More intensive treatment may contribute to the reuction of complications in chilren with iabetes. ÔIntensive treatment aims to maintain bloo glucose as close to normal as possible on a continuous basis, an is istinguishe from Ôconventional treatment by increase vigilance in bloo glucose testing, responsive ajustments to insulin osage base on current bloo glucose level as well as foo intake an exercise, an regular visits to the iabetes healthcare team. Among those with type 1 iabetes treate intensively, there was a ecrease in nephropathy an retinopathy between 1990 an 2002 (46). (ii) Type 2 iabetes is increasing rapily, largely riven by lifestyle factors such as overweight an obesity, an is being seen in eveloping countries as lifestyle habits become inappropriately urbanize an moernize. (iii) Diabetes represents a huge buren to the iniviual, the family an to society. Early an aggressive treatment must be strive for, an lifestyle changes nee to be mae possible in orer to prevent iabetes from escalating out of control worlwie. Only by achieving goo control can the complications be prevente or minimize. (iv) There are still many gaps in the ata on type 1 an type 2 iabetes in chilren an aolescents. These gaps nee to be aresse to unerstan the epiemiological patterns of isease an the consequences of these patterns to facilitate appropriate management an optimal allocation of health care funing. Recommenations (i) Fill in the gaps regaring the incience an prevalence of type 1 an type 2 iabetes, in orer to more fully unerstan the magnitue an impact of the problem. (ii) Initiate local, regional or nation-wie stuies on the epiemiology of iabetes. (iii) Fill in the gaps on the incience an cost of the complications of iabetes. (iv) Use this more complete knowlege for effective planning for resource allocation, comprehensive eucation, early etection/intervention an prevention strategies. (v) Buil on this knowlege to formulate prevention messages for chilren an youth at risk of eveloping type 2 iabetes an their families, emphasizing nutrition an exercise strategies to maintain a healthy weight an overall health from infancy onwar. (vi) Stimulate eucation an knowlege on the most important cause of eath in (type 1) iabetes: DKA, by implementing eucation an awareness programmes. (vii) Develop national plans for iabetes care as suggeste by the Unite Nations Resolution on Diabetes, with specific focus on chilhoo iabetes. Conclusion (i) The incience of type 1 iabetes is rising in chilren an aolescents, an there is a shift in that chilren are being iagnose at younger ages. References 1. LIBMAN I, SONGER T, LAPORTE R. How many people in the US have IDDM? Diabetes Care 1993: 16: GALE EAM. The rise of chilhoo type 1 iabetes in the 20 th century. Diabetes 2002: 51: Peiatric Diabetes 2007: 8 (Suppl. 8): 10 18

17 The Global Buren of Youth Diabetes: Perspectives an Potential 3. VELASQUEZ-MIEYER P, PEREZ-FAUSTINELLI S, COWAN PA. Ientifying chilren at risk for obesity, type 2 iabetes an cariovascular isease. Diabetes Spectr 2005: 18: BARKER DJ. Coronary heart isease: a isorer of growth. Horm Res 2003: 59 (Suppl. 1): OWEN CG, MARTIN RM, WHINCUP PH, SMITH GD, COOK DG. Effect of infant feeing on the risk of obesity across the life course: a quantitative review of publishe evience. Peiatrics 2005: 115: KNIP M, AKERBLOM HK. Early nutrition an later iabetes risk. Avances in experimental meicine an biology. 2005: 569: ROTHWELL PM, GUTNIKOV SA, MCKINNEY PA, SCHOBER E, IONESCU-TIRGOVISTE C., NEUU A FOR THE EUROPEAN DIABETES STUDY GROUP. Seasonality of birth in chilren with iabetes in Europe: multicentre cohort stuy. BMJ 1999: 319: INTERNATIONAL DIABETES FEDERATION (IDF) WORLD ATLAS of DIABETES (available from 9. OTANI T, YOKOYAMA H, HIGAMI Y, KASAHARA T, UCHIGATA Y, HIRATA Y. Age of onset an type of Japanese younger iabetics in Tokyo. Diabetes Res Clin Pract 1990: 10: ROSENBLOOM AL, JOE JR, YOUNG RS, WINTER WE. Emerging epiemic of type 2 iabetes in youth. Diabetes Care 1999: 22: SILINK M. Chilhoo iabetes: a global perspective. Horm Res 2002: 57 (Suppl. 1): BONEY CM, VERMA A, TUCKER R, VOHR BR. Metabolic synrome in chilhoo: association with birth weight, maternal obesity, an gestational iabetes mellitus. Peiatrics 2005: 115: e290 e UMPAICHITRA V, BANERJI MA, CASTELLS S. Autoantiboies in chilren with type 2 iabetes mellitus. J Peiatr Enocrinol Metab 2002: 15 (Suppl. 1): REINEHR T, SCHOBER E, WIEGAND S, THON A, HOLL R. Beta-cell autoantiboies in chilren with type 2 iabetes mellitus: subgroup or misclassification? Arch Dis Chil 2006: 91: BETTS P, MULLIGAN J, WARD P, SMITH B, WILKIN T. Increasing boy weight preicts the earlier onset of insulin-epenant iabetes in chilhoo: testing the Ôaccelerator hypothesis (2). Diabet Me 2005: 22: AMERICAN DIABETES ASSOCIATION. Type 2 iabetes in chilren an aolescents. Diabetes Care 2000: 23: ISPAD CONSENSUS GUIDELINES FOR THE MANAGEMENT OF TYPE 1DIABETES MELLITUS IN CHILDREN AND ADOLES- CENTS. ISPAD, Meforum, Zeist, the Netherlans, MOHSIN F, ZABEEN B, ZINNAT R, AZAD K, NAHAR N. Clinical profile of iabetes mellitus in chilren an aolescents uner 18 years of age. Ibrahim Meical College Journal 2007: 1: WINTER WE, NAKAMURA M, HOUSE DV. Monogenic iabetes mellitus in youth. The MODY synromes. Enocrinol Metab Clin North Am 1999: 28: KARVONEN M, VIIK-KAJANDER M, MOLTCHANOVA E, LIBMAN I, LAPORTE R, TUOMILEHTO J; FOR THE DIABETES MONDIALE PROJECT GROUP. Incience of chilhoo type 1 iabetes worlwie. Diabetes Care 2000: 23: EURODIAB ACE STUDY GROUP. Variation an trens in incience of chilhoo iabetes in Europe. Lancet 2000: 355: ZHAO HX, STENHOUSE E, SOPER C et al. Incience of chilhoo-onset type 1 iabetes mellitus in Devon an Cornwall, Englan, Diabet Me 1999: 16: FELTBOWER RG, BODANSKY HJ, MCKINNEY PA, HOUGHTON J, STEPHENSON CR, HAIGH D. Trens in the incience of chilhoo iabetes in south Asians an other chilren in Brafor, UK. Diabet Me 2002: 19: SHALTOUT AA, MOUSSA MAA, QABAZARD M et al; FOR THE KUWAIT DIABETES STUDY GROUP. Further evience for the rising incience of chilhoo type 1 iabetes in Kuwait. Diabet Me 2002: 19: CRAIG ME, HOWARD NJ, SILINK M, CHAN A. The rising incience of chilhoo type 1 iabetes in New South Wales, Australia. J Peiatr Enocrinol Metab 2000: 13: YANG Z, WANG K, LI T et al. Chilhoo iabetes in China. Enormous variation by place an ethnic group. Diabetes Care 1998: 21: DUNGER DB, SPERLING MA, ACERINI CL et al. ESPE/ LWPES consensus statement on iabetic ketoaciosis in chilren an aolescents. Arch Dis Chil 2004: 89: KEITH SW, REDDEN DT, KATZMARZYK PT et al. Putative contributors to the secular increase in obesity: exploring the roas less travele. Int J Obes 2006: 30: YACH D, STUCKLER D, BROWNELL KD. Epiemiologic an economic consequences of the global epiemics of obesity an iabetes. Nat Me 2006: 12: ROSENBLOOM AL, JOE JR, YOUNG RS, WINTER WE. Emerging epiemic of type 2 iabetes in youth. Diabetes Care 1999: 22: FAGOT-CAMPAGNA A, PETITT DJ, ENGELGAU MM et al. Type 2 iabetes among North American chilren an aolescents: an epiemiologic review an a public health perspective. J Peiatr 2000: 136: SEARCH FOR DIABETES IN YOUTH STUDY GROUP, LIESE AD, D AGOSTINO RB et al. The buren of iabetes mellitus among US youth: prevalence estimates from the SEARCH for Diabetes in Youth Stuy. Peiatrics 2006: 118: THE WRITING GROUP FOR THE SEARCH FOR DIABETES IN YOUNG STUDY GROUP, DABELEA D, BELL RA et al. Incience of iabetes in youth in the Unite States, JAMA 2007: 297: DEAN H. NIDDM-Y in First Nation chilren in Canaa. Clin Peiatr 1998: 37: BETTS PR, JEFFERSON IG, SWIFT PGF. Diabetes care in chilhoo an aolescence. Diabet Me 2002: 19 (Suppl. 4): MCMAHON SK, HAYNES A, RATNAM R et al. Increase in type 2 iabetes in chilren an aolescents in Western Australia. Me J Aust 2004: 180: URAKAMI T, KUBOTA S, NITADORI Y, HARADA K, OWADA M, KITAGAWA T. Annual incience an clinical characteristics of type 2 iabetes in chilren as etecte by urine glucose screening in the Tokyo metropolitan area. Diabetes Care 2005: 28: WEI JN, SUNG FC, LIN CC, LIN RS, CHIANG CC, CHUANG LM. National surveillance for type 2 iabetes mellitus in Taiwanese chilren. JAMA 2003: 290: PINHAS-HAMIEL O, ZEITLER P. The global sprea of type 2 iabetes mellitus in chilren an aolescents. J Peiatr 2005: 146: TYPE 2 DIABETES IN CHILDREN AND ADOLESCENTS. American Diabetes Association. Diabetes Care 2000: 23: PAVKOV ME, BENNETT PH, KNOWLER WC, KRAKOFF J, SIEVERS ML, NELSON RG. Effect of youth-onset type 2 iabetes mellitus on incience of en-stage renal isease an mortality in young an mile-age Pima Inians. JAMA 2006: 296: BRYDEN KS, PEVELER RC, STEIN A, NEIL A, MAYOU RA, DUNGER DB. Clinical an psychological course of iabetes from aolescence to young aulthoo: a longituinal cohort stuy. Diabetes Care 2001: 24: Peiatric Diabetes 2007: 8 (Suppl. 8):

18 The Global Buren of Youth Diabetes: Perspectives an Potential 43. SVENSSON M, ERIKSSON JW, DAHLQUIST G. Early glycemic control, age at onset, an evelopment of microvascular complications in chilhoo-onset type 1 iabetes: a population-base stuy in northern Sween. Diabetes Care 2004: 27: EPPENS MC, CRAIG ME, CUSUMANO J et al. Prevalence of iabetes complications in aolescents with type 2 compare to type 1 iabetes. Diabetes Care 2006: 29: YOKOYAMA H, OKUDAIRA M, OTANI T et al. Higher incience of iabetic nephropathy in type 2 than in type 1 iabetes in early-onset iabetes in Japan. Kiney Int 2000: 58: MOHSIN F, CRAIG ME, CUSUMANO J et al. Discorant trens in microvascular complications in aolescents with type 1 iabetes mellitus from 1990 to Diabetes Care 2005: 28: Peiatric Diabetes 2007: 8 (Suppl. 8): 10 18

19 Peiatric Diabetes 2007: 8 (Suppl. 8): All rights reserve # 2007 International Diabetes Founation (IDF) Peiatric Diabetes Chapter two Diabetes in chilren: organization of care Challenges Chilren an aolescents face significant burens on health an quality of life associate with the early appearance of iabetes. The increase risk of complications that accompanies a longer isease uration further impacts the potential for optimal care an long-term goo health. Early etection, vigilant management, improve elivery of an access to ongoing care an consistent self-management skills are key strategies for preventing or lessening much of the buren of iabetes. Optimal iabetes care for chilren an aolescents is complicate by the fact that the aily emans of iabetes management must be superimpose on the alreay emaning challenges of physical an emotional growth. Diabetes care for chilren shoul thus be a customize team effort of specialists who are equippe to eal effectively with not only meical nees, but also the unique eucational, nutritional, physical activity an behavioural nees of the chil or aolescent. However, the organization of care for iabetes, particularly in general practice where a significant proportion of care takes place, varies extensively, affecte by the availability of both financial an personnel resources. Practice, patient an organizational factors all influence the level of care of people with iabetes. Resource allocation to support optimal organization of iabetes care is a function not only of availability of funs, but also of the unerstaning of policy makers that iabetes care constitutes a significant health care priority. Eucation in support of iabetes care thus extens beyon the iniviual with iabetes an the physician to high-level ecision makers. Introuction All people with iabetes eserve optimal care, but in general the quality of care remains suboptimal worlwie (1). Although aequate guielines exist that efine stanars of care for every aspect of type 1 an type 2 iabetes in chilren an aolescents, both national an international in scope [such as those from the American Diabetes Association (ADA) 2005 (2), International Diabetes Feeration (IDF) 2004 (3) an 2005 (4), an International Society for Peiatric an Aolescent Diabetes (ISPAD) 2000 (5)], they are not always followe. Barriers to implementation of guieline recommenations inclue (Table 1) not just a lack of resources, incluing aequate numbers of health care professionals an aequate amounts of meications, but also a general lack of unerstaning about iabetes an of the buren that it represents to the chil, his or her family, health care proviers an the community. Many chilren an aolescents are facing a greater buren associate with early appearance of iabetes an an increase risk of complications with longer uration of isease. Early etection, improve access to an elivery of care an better self-management are key strategies for preventing much of the buren of iabetes. Several lines of evience show the importance of goo iabetes care to improve the quality of life, reuce the chances for acute an chronic complications an create the basic conitions to reach an inepenent life with iabetes. Excellent outlines for eucation are inclue in a number of clinical practice guielines an in separate articles. Diabetes care as recommene in clinical practice guielines requires access to appropriate meical care an meication, but the pathophysiology an nature of the isease (with constant changes in glucose levels) requires constant ajustments to be mae by the chil in coorination with the parents, in turn requiring constant ecisions on meication, foo choices, activities, etc. Diabetes self-management eucation for every chil an their family is thus necessary to achieve appropriate regulation of the isease. Aitional challenges of treating chilren with iabetes Diabetes in chilren an aolescents presents particular challenges beyon those involve in the management of iabetes in aults. These inclue management of the isease while maintaining normal physical an psychological growth an evelopment, ealing with family ynamics (the entire family may be viewe as 19

20 The Global Buren of Youth Diabetes: Perspectives an Potential Table 1. Barriers to implementation of iabetes clinical practice guielines Lack of resources: primary care an specialist health care professionals from various isciplines, iabetes eucators. Lack of meication: supplies of iabetes meications incluing insulin are variable an unreliable in some regions. Lack of unerstaning an knowlege of full impact of iabetes on the chil an nee to pursue comprehensive care. the patient when the chil has iabetes) an organizing care for the chil with iabetes when he or she is outsie the home environment. The goal of treatment is to meet these challenges in the management of every chil with iabetes, worlwie. Goo organization of care helps to make best use of the resources available, an to eploy these resources for the maximum benefit of chilren with iabetes. Among the first things require for proper iabetes care is collection of ata, which can not only serve as the basis for aily iabetes care, but are also important to create a atabase on outcome parameters on either a local or a national scale. Only through proper collection an analysis of such ata will political awareness an change become possible. Data collection To assist with planning an optimal use of resources, there is a nee for more complete ata not only on the incience an prevalence of iabetes but also on patterns of isease an treatment outcomes. The value of having ata on patterns of isease is exemplifie by several collaborative multicenter stuies such as those conucte in Japan which showe two istinct types of iabetes among Japanese chilren (6); multicenter stuies in Denmark (7) an Germany (8) an international stuies (9); all of which showe that only a minority of chilren an aolescents reach treatment goals, even within sophisticate health care systems. There are major gaps in knowlege worlwie concerning the impact of iabetes. A national register by country woul be useful in estimating the care require. It woul also be useful to provie governments an key stakeholers (clinicians, professional associations an researchers) with appropriate ata to support efforts to work towars improve iagnosis an care. Goo iabetes management requires people with iabetes to take an active role in their self-care. It is important at the time of iagnosis to provie eucation about what to expect in iabetes care so that the chil an family feel positive an empowere. The ADA recommens as the first step to buil a health care team (ieally comprising a peiatric enocrinologist, iabetes eucator, ietician, mental health professional, ophthalmologist, exercise specialist, poiatrist, pharmacist) an evelop a goo working relationship with the team. Current guielines such as those from the ADA, ISPAD an Asian Pacific Enocrine Group recommen that the chil who is newly iagnose with type 1 iabetes be evaluate by a iabetes team who can provie peiatric-specific eucation an treatment. At the time of iagnosis, a full baseline history shoul be taken, both of general health parameters an etails relating to onset of iabetes. A number of measurements nee to be monitore from iagnosis onwars; these are etaile in the Appenix ÔComponents of the initial iabetes visit an continuing visits (2). In aition, the following ata eliver a minimal ataset for a registry: (i) The number of patients, an their age istribution; (ii) Type of iabetes, an treatment require (insulin, iet/lifestyle, antiiabetic meication); (iii) Mortality from iabetes an its causes [iabetic ketoaciosis (DKA), hypoglycemia, complications, coinciing iseases an conitions]; (iv) Morbiity (such as complications, an nee for hospitalization); (v) Access to care (ieally, 24-h access); (vi) Expertise of care provie (multiisciplinary, specialist, primary care, age-specific); an (vii) Quality of care achieve (frequency of follow-up, glycate hemoglobin levels, incience of complications). Structure collection of these clinically useful criteria coul be organize aroun a simple-to-use computer atabase; many clinics are equippe to support this level of ata collection on a patient-by-patient basis. These atabases coul be initiate at a community level rather than at a national level. The ata obtaine woul help to pinpoint areas for improvement in iagnosis an care on both a national an local level while proviing important baseline information for research. For example, changing a parameter in iabetes care an then evaluating the outcome coul be use to inform further an more appropriate moifications to care. Levels of care The IDF, in its global guieline for treatment of type 2 iabetes (4), efine three levels of care. These three levels have been escribe in recognition of varying levels of available resources in many parts of the worl, an are also applicable to the management of people with type 1 iabetes (Table 2). 20 Peiatric Diabetes 2007: 8 (Suppl. 8): 19 25