Summary of essential requirements and specific recommendations 

Essential requirements

• All health care providers at local, regional and national levels have a duty to ensure that children and adolescents receive an uninterrupted supply of

• Insulin of reputable quality (may be human or animal)
• Syringes and/or insulin pens and/or injector devices and needles, which are essential for the proper administration of insulin
• Blood and urine testing equipment, which is essential for monitoring of metabolic control

• All children, adolescents, their families and other care givers should have access to

• Age-appropriate support, care and education in diabetes with the aim of enhancing self-management for young people
• Health care professionals with experience and expertise in the management of both diabetes and child health care
• Twenty-four-hour advice and support for safe and effective diabetes management including acute emergencies
• Written (or electronic) information and guidelines on the management of the different phases of diabetes in childhood and adolescence

• All health care providers at local, regional and national levels should be aware of

• The enormous personal, social and psychological burdens of childhood diabetes on the individual and on families
• The potentially devastating long-term consequences of poorly managed diabetes including the substantial financial costs to individuals and to health care services
• The need for adequate technical, financial and human resources to improve the total management of young people with diabetes

Specific recommendations

Diagnosis and presentation

• There is a need for greatly increased awareness of the symptoms of diabetes both in the general public and by health care professionals
• Prompt diagnosis and rapid treatment are essential if the complications of diabetic ketoacidosis (DKA) are to be avoided
• Weight loss, increased thirst or excessive urination in a child must always be investigated immediately by at least a urinary glucose test
• There is a need for greater awareness, accurate assessment and methods of prevention of the less common forms of diabetes, particularly the increasing prevalence of obesity-related type 2 diabetes in certain ethnic groups
• Children developing diabetes in locations remote from specialized centers require particular attention to ensure safe, consistent care and continuing management

Early management

• Education is the keystone to successful management. It needs to be structural, adaptable and personalized, patient-centered, appropriate to the level of maturity and understanding of the young person and family, culturally sensitive
• Educational messages require repetition, and the curriculum should be regularly re-evaluated
• From the first day after diagnosis, the care, education and emotional support for the young person and the family should be provided by a team of specialists, all of whom should have received specialist training in both diabetes and pediatrics (particularly child and adolescent development)
• The multidisciplinary diabetes care team for children and adolescents should include the following essential members
  
  • pediatrician specializing in diabetes/endocrinology (or physician with a special interest in childhood and adolescent diabetes)
  • diabetes specialist nurse or diabetes educator
  • pediatric dietician with special expertise in diabetes
  and there should be easy access to services for children provided by
  
  – social workers, counselors/psychologists/child psychiatrists, ophthalmologists and podiatrists
  
• Resources should be made available for the diabetes care team to be based in specialized regional children’s diabetes centers of excellence
• In areas of low population density or where diabetes occurs rarely, the numbers of children with diabetes will be small. In these circumstances care is likely to be provided by a locally based pediatrician/physician who should have easy access to facilities, advice and the possibility of annual review by the diabetes care team based in the regional center of excellence
• The importance of ‘a good start’ to the early education of the young person with diabetes cannot be overemphasized and is more likely to be provided by teams frequently dealing with diabetes and working in centers of excellence
• Most children developing diabetes will be admitted to hospital for immediate management but if 24-h community facilities are available, domiciliary management has been shown to be successful
• Parents or other care givers should be invited to stay with their children in hospital at all times

Crisis and emergency management

• It is good clinical practice for young people and care givers to receive advice on how to adjust insulin to maintain glycemic control especially during episodes of intercurrent illness, hyperglycemia or hypoglycemia. It is recommended that
  
  • short/rapid-acting insulin should always be available for crisis management
  • insulin should never be stopped except on the advice of an experienced member of the diabetes care team
  • young people should always carry with them a supply of glucose or sucrose, particularly during exercise and sport
  • glucagon should be immediately available to care givers
• Recognition of the earliest signs of both hypoglycemia and DKA are essential parts of the educational curriculum. All care givers including relatives, babysitters, teachers, sports instructors and youth leaders should have easy access to such information, particularly the management of hypoglycemia
• Equipment and skills for monitoring BG and ketone levels are essential for the optimal management of diabetic emergencies
• Independent adjustment of insulin doses by young people and parents is facilitated by 24-hour access to members of the diabetes care team
• Centers managing young people with DKA must always have available
  
  • a written protocol
  • senior medical personnel experienced in the management of DKA to provide emergency advice
  • a specialized children’s inpatient facility (with access to intensive care facilities whenever possible)
  • specialist children’s nurses trained to perform frequent, careful, clinical monitoring
  • laboratory facilities able to provide rapid, frequent, biochemical measurements

Outpatient management, monitoring and metabolic control

• Regular, uninterrupted, consistent follow-up of young people for the optimal management of their diabetes should be provided by the diabetes care team
• Frequent reassessments are recommended in the first weeks and months after diagnosis to enable optimal metabolic control to be achieved. Thereafter it is common practice to organize at least three or four visits per year to a children’s specialist diabetes clinic, but more frequently if glycemic control is unsatisfactory
• Frequent, accurate self-monitoring of BG is the optimal method of measuring short-term glycemic control and is of good educational value. It is the only method by which optimal glycemic control can be achieved by intensified management regimens
• It is good clinical practice to organize an annual review with assessment of
  
  • growth, development, education and psychosocial change
  • injection sites and techniques
  • glycemic control
  • puberty
  • nutritional plan and dietary management
  • associated conditions (goiter/thyroid dysfunction, dyslipidemia, celiac disease, skin or foot problems)
  • complications screening
• Facilities for the measurement of glycated hemoglobin (preferably HbA1c) should be available to all centers caring for young people with diabetes. There should be regular quality control comparisons with national standards and those set by the Diabetes Control and Complications Trial
• It is good clinical practice to measure HbA1c at least three or four times each year, preferably by capillary collection methods and available at the time of the clinic visit
• For each individual the targets of optimal metabolic control should be the lowest achievable blood or urinary glucose profiles and HbA1c levels without the occurrence of frequent or severe hypoglycemia
• The diabetes care team and voluntary organizations should be encouraged to develop out-of-clinic activities such as support groups, educational events, holidays and camps

Nutritional management

• Specialist dietetic advice should be available at the time of diagnosis and regularly afterwards to provide essential dietetic advice for achieving glycemic control, which is to distribute the intake of food energy and carbohydrate to balance insulin action profiles and exercise levels
• Total energy intake must be sufficient for optimal growth but to avoid obesity
• Total energy intake should be distributed as follows
  
  • carbohydrate >50% (mainly complex unrefined higher fiber carbohydrate)
  • fat 30–35% (<10% saturated fat)
  • protein 10–15% (decreasing with age)
• Fruit and vegetables are strongly recommended, distributed throughout the day

Psychosocial and financial issues

• It should be recognized that psychosocial factors are the most important influences affecting the care and management of childhood diabetes
• There must be no stigma attached to, nor discrimination against, children and adolescents with diabetes. They should have equal opportunities and social rights in education, schools, colleges, employment and insurance schemes
• Care givers should have easy access to expert advice on the financial and social support available from local services, the state and voluntary organizations

Adolescence

• Special facilities should be developed for adolescents and young adults to help manage their own diabetes in an optimal environment and to negotiate the difficult transition between children’s and adult services
• It is good clinical practice to organize joint transition clinics with the involvement of both pediatric and adult diabetes care teams
• Specific advice should be made available to adolescents on the influence of diabetes on puberty, growth, vascular complications, metabolic control and exercise, and information made available on pregnancy, contraception, smoking, alcohol, drugs, driving and employment

Vascular complications

• Awareness of potential long-term microvascular complications is a fundamental part of diabetes education and should be provided at a rate appropriate to the young person’s understanding and maturity
• Positive encouragement should be provided to emphasize that improvements in metabolic control reduce the risks of complications

Screening recommendations

Retinopathy and nephropathy

• Prepubertal onset of diabetes
  
  • 5 years after onset, or
  • aged 11 years, or
  • at puberty (whichever is earlier)
• Pubertal onset of diabetes
  
  • 2 years after onset and annually thereafter

• retinal examinations through dilated pupils (preferably with retinal photography)
• microalbuminuria measurements
• blood pressure measurement
• clinical review of possible neurological dysfunction

Associated conditions

• Height and weight monitoring is an essential part of diabetes care
• Assessment of associated autoimmune and other conditions should be performed at an annual clinic review (see above)

Surgery

• A written protocol should be available in all centers caring for young people with diabetes to ensure the safe management of children and adolescents undergoing surgical procedures. The protocol should be agreed between anesthetic, surgical and pediatric staff

Audit, training and research

• Health care providers and diabetes care teams should ensure that there is a comprehensive population-based diabetes register (either manual or com-puter-ized) which includes the names of all young people within a particular area or region. Regular register reviews and audits will assist in the evalua-tion of standards, assessment of outcome and identifying young people who default, and thus help to ensure their consistent support and surveillance
• Improvements in the training of specialists who provide care for children and adolescents is essential. Training should include not only diabetes care but education theory, psychology, counseling and the mechanisms of behavior change
• Research initiatives which help to investigate not only the etiology, development and prevention of diabetes and its associated complications but also optimal methods of care and management should be encouraged at local, national and international levels. Training in research methods and specific training fellowships in pediatric diabetes will help in promoting such research