Executive Summary

Less than one-fifth of the people in the world who are diagnosed with diabetes receive the level of care required to maintain optimal health and quality of life. With the incidence of both type 1 and type 2 diabetes increasing at an alarming rate, this is a distressing statistic. Despite the existence of effective national and international guidelines, too few children achieve the appropriate levels of care. Effective diagnosis and care for children with diabetes is no less than mandatory. Diabetes care for youth must be compliant with the United Nation’s ‘‘Convention on the Rights of the Child’’, wherein it is recognized that the child is entitled to ‘‘enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health’’. This document addresses key aspects of diabetes, its care and the costs of care in youth under the headings of Epidemiology; Organization of Care; Psychosocial Aspects; and Socioeconomic Aspects. The authors’ goals are to create a standard of care’ which, although dependent on local and national potential and possibilities, serves as a benchmark for improved care to children and adolescents. A recurring theme throughout these chapters is that knowledge of the goals of treatment of diabetes and the components of optimal diabetes care are now well established and well expressed in clinical practice guidelines from numerous sources worldwide. The gap that exists between knowledge and practical implementation of this knowledge is confounding progress in delivering optimal care to all individuals with diabetes including children. The epidemiology of diabetes in children is shifting dramatically. An earlier onset of type 1 diabetes is now being observed, but it is the appearance and increasing incidence of type 2 diabetes in young people, once the sole domain of the adult, that is particularly disturbing. The increase of diabetes is closely related to socioeconomic and environmental factors together with a genetic influence. Overweight and obesity due to a shifting balance and quality of food intake and energy output is a primary modifiable risk factor. There is an enormous gap between knowledge and practice of optimal diabetes care, and a major factor in this gap is organization of care. The components of diabetes care being well established, it is clear that delivery of optimal care is the weak point in the process. Whatever the cause or etiology, without proper treatment diabetes is deadly and dangerous to health. Its potential severity warrants timely and effective treatment. Delivery of care has a number of confounding variables including insufficient financial resources to fund specialised healthcare personnel and in some regions, treatments including insulin; inadequate education of people with diabetes and healthcare providers to embrace the principles of optimal care; and lack of understanding of decision makers of the priority represented by diabetes care due to the impact on not only the individual but also society as a whole. The psychosocial impact of diabetes is largely a hidden cost, but a cost that can undo even the best intentions for care. Young people with diabetes are particularly impacted by psychosocial issues because they are facing a future of living with diabetes at high risk if diabetes is not well controlled from the outset. Parents and other family members can also experience psychosocial impact from the ongoing stress associated with meeting the child’s daily standards for care, and the price in human terms of poor care. The impact of diabetes on children has particularly serious consequences for the socioeconomic health of not only the individual but also of all nations due to the compromises now and in the future for the child’s education, future productivity and contributions to society. Barriers to investment in diabetes care must be replaced with informed investment based on an expanded base of evidence of the far-reaching effects and associated costs of diabetes in children. In the face of the significant proportion of children with diabetes who are not receiving effective care – much less those who are never even diagnosed – it is an unfortunate fact that affordable and effective care