The following recommendations are for all health professionals who advise and support children and young people with diabetes and their families. They should be used in combination with other recent practice guidance, particularly the International Society for Paediatric and Adolescent Diabetes Consensus Guidelines, 2000.⁴ There is no agreed definition of what is meant by a young person in this context. Various age ranges have been used in the literature.

2.1 Diagnosis and epidemiology

Diabetes is the most common metabolic disease in the young. The Scottish Study Group for the Care of the Diabetes in the Young has shown that currently there are nearly 2000 people with diabetes aged under 16 years in Scotland, with an annual incidence of 25 per 100,000 population and a near tripling of new cases in the last 30 years.⁵ Type 1 diabetes, resulting from beta-cell destruction and absolute insulin deficiency, accounts for over 90% of diabetes in young people aged less than 25 years, and is autoimmune in origin. Non-type 1 diabetes is being recognised with increasing frequency, particularly emerging molecular forms of diabetes, diabetes secondary to pancreatic disease and a rise in type 2 diabetes and other insulin resistance syndromes in the young.⁶

2.1.1 TYPE 1 DIABETES

12-15% of young people under the age of 15 years with diabetes mellitus have an affected first degree relative (a positive family history).⁷ Children are three times more likely to develop diabetes if their father has diabetes rather than their mother.⁸ While there are known antibody markers of prediction in high risk subjects, there is no evidence for effective methods of prevention of diabetes.⁹ Screening is currently considered unethical except in the context of a trial. There are several randomised trials in progress (e.g. ENDIT, DPT-1, DIPP) investigating different therapies for the prevention of type 1 diabetes. It is anticipated that results will be available in the next five years. Evidence level 2++

Screening for pre-type 1 diabetes is not recommended in either the general population or in high risk children and young people.

2.1.2 CYSTIC FIBROSIS AND DIABETES

20% of patients with cystic fibrosis will develop secondary diabetes by the age of 20, with an incidence which increases thereafter to 80% by the of age 35.¹⁰ Limited data suggest that clinical symptoms deteriorate when diabetes develops in cystic fibrosis^{11, 12}, although no evidence exists that the presence of diabetes or its treatment affects long term survival. Evidence level 2+

Patients with cystic fibrosis should be screened annually for diabetes from 10 years of age.

2.2 Initiating therapy at diagnosis

Home-based instruction of the newly diagnosed child or young person appears to be at least as effective as inpatient instruction in terms of glycaemic control and family acceptability over a two-year period.¹³ Management in the community using a home-based education programme for patients with newly diagnosed diabetes has been shown also to be cost-effective.^{14, 15} Evidence level 2+

A home-based programme for initial management and education of children with diabetes and their families is an appropriate alternative to a hospital-based programme.

The evidence on the role of the intensification of therapy in the attempt to achieve as rapid as possible normoglycaemia is inconsistent. In particular, there is no evidence of a sustained effect of any specific insulin therapy on glycaemic control during the first few months after diagnosis. Therefore, no recommendation can be given for the most appropriate insulin therapy at diagnosis.

2.3 Continuing management

There is at present no evidence for the effectiveness of any medication other than insulin in the management of type 1 diabetes in the young.

Medications other than insulin presently have no role in the management of type 1 diabetes in young people.

2.3.1 INSULIN REGIMEN

Conventional therapy for type 1 diabetes (twice daily insulin with support from a multidisciplinary healthcare team and regular diabetes and health monitoring) is associated with variable results.⁷

Limited data support an improvement in glycaemic control using three rather than two injections per day.^{7, 16, 17} Evidence level 2+

Evidence regarding the impact of an intensive insulin regimen upon long term control is derived principally from the Diabetes Control and Complication Trial (DCCT) which also involved a comprehensive patient support element (diet and exercise plans, monthly visits to the health care team etc.).^{18, 19} Intensive insulin therapy (four injections or more per day or pump insulin) significantly improves glycaemic control over a sustained period compared with conventional insulin therapy (two injections per day). DCCT did not include children aged less than 13 years and, due to the study design, it is impossible to separate the benefits of intensive insulin therapy from intensive support. Evidence level 1+

Intensive insulin therapy should be delivered as part of a comprehensive support package.

While there is no evidence on the most effective form of support package, in general this refers to increased contact between patients and their families with a local multidisciplinary team of health professionals delivering specific health care strategies.

The risk of hypoglycaemia increases with intensive therapy^{18, 19} but rapid acting insulin analogues, as part of a three or four injection regimen can reduce hypoglycaemia.^{20, 21, 22} Evidence level 1+, 2+

The insulin regimen should be tailored to the individual child to achieve the best possible glycaemic control without disabling hypoglycaemia.

Post-prandial analogue insulin may safely be used in very young children with unpredictable eating patterns.

2.3.2 DIETARY MANAGEMENT

A regimen which includes dietary management improves glycaemic control.^{18, 19} Limited evidence was identified concerning the optimal type of dietary therapy.²³ There is a lack of evidence to recommend either a qualitative or quantitative approach as the most effective mode of dietary therapy. Evidence level 1+, 2+

Dietary advice as part of a comprehensive management plan is recommended to improve glycaemic control.

Specialist dietetic advice should be given by a dietitian with expertise in childhood diabetes, wherever possible.

2.4 Psychological interventions

Factors contributing to an increased risk of young people with diabetes developing psychological problems include:

• avoidance coping (strategies which do not actively try to solve a difficulty faced)²⁴
• too much responsibility on the child²⁴
• family conflict²⁴
• lack of communication, both within families and with the diabetes team²⁵
• low socio-economic status²⁵
• non-traditional family structure²⁶
• poor maternal health, especially depression.²⁷
  Evidence level 2+

Eating disorders are more common in adolescents with diabetes compared with non-diabetic peers, and adversely affect glycaemic control.^{28, 29} Evidence level 2++

Regular assessment for psychological problems, especially maladaptive coping strategies and eating disorders is recommended.

Specific psychological problems (e.g. maladaptive coping strategies) linked to future glycaemic control, can be identified at diagnosis and 1-2 years later, using validated tools performed by a trained practitioner.³⁰ Evidence level 2++

Psychological or educational interventions have positive effects on psychological outcomes, knowledge about diabetes and glycaemic control.³¹ Maintaining parental involvement improves glycaemic control.^{32, 33} Evidence level 2++

Interventions which promote diabetes-specific coping skills are effective and add to the effectiveness of intensive management.^{34, 35} Evidence level 1+

The use of cognitive coping strategies targeted at diabetes-specific problems is recommended.

Parental support and family communication should be encouraged, with targeted psychological treatment of family disruption and related stress factors.

2.5 Long term complications and screening

2.5.1 RISK OF MICROVASCULAR COMPLICATIONS

Early abnormalities in children and adolescents (e.g. microalbuminuria, background retinopathy) predict later development of long-term microvascular complications.^{18, 19, 36, 37} Evidence level 2+

Maintaining glycaemic control to as near normal as possible significantly reduces the long term risk of microvascular diseases.^{18, 19} Poor glycaemic control (HbA1c >10%) over time in young people with diabetes increases the risk of the development of retinopathy by approximately eightfold.¹⁹ Evidence level 1+

To reduce the risk of long term microvascular complications, the target for all young people with diabetes is the optimising of glycaemic control towards a normal level.

2.5.2 SCREENING FOR EARLY SIGNS OF MICROVASCULAR DISEASE

The literature is confusing in relation to the timing of commencing screening in young people with diabetes. Age and puberty are reported without any strict definition. For clarity and simplicity the guideline development group suggests 12 years of age in both boys and girls.

Early microvascular abnormalities may occur before puberty, which then appears to accelerate these abnormalities.³⁸ Evidence level 2+

Several cohort studies demonstrate the ability to detect the following in young people with diabetes:

• retinopathy (by ophthalmoscopy or fundal photography)³⁹
• microalbuminuria (by albumin excretion rate (AER) or albumin/creatinine ratio (ACR))^{40, 41, 42}
• hypertension.^{43, 44, 45}
  Evidence level 2+, 3

Young people with diabetes should receive examination of the retina annually from the age of 12 years.

Young people with diabetes should have their urine microalbuminuria (overnight AER or first morning ACR) tested annually from the age of 12 years.

Blood pressure should be measured annually in young people with diabetes from the age of 12 years.

Young people with diabetes who have abnormal recorded levels of microalbuminuria or hypertension should make intensive efforts to optimise glycaemic control to minimise progression to microvascular disease.

There is no evidence that routine screening for autonomic neuropathy or hyperlipidaemia are of benefit.

2.6.3 ASSOCIATED CONDITIONS

Thyroid and coeliac disease are reported to be increased in young people with type 1 diabetes compared with non-diabetic subjects.^{46, 47, 48} Both thyroid and coeliac disease may occur with minimal symptoms that may be missed during routine care. Evidence level 2+

Young people with diabetes should be screened for thyroid and coeliac disease at onset of diabetes and at intervals throughout their lives.

Standard blood tests exist to screen for thyroid and coeliac disease but there are limited data to support the specific frequency of screening.