3.1. Diagnosis

The diagnosis of type 1 diabetes in children and young people should be based on the criteria specified in the 1999 World Health Organization report on the diagnosis and classification of diabetes mellitus. [D]

Children and young people with suspected type 1 diabetes should be offered immediate (same day) referral to a multidisciplinary paediatric diabetes care team that has the competencies needed to confirm diagnosis and to provide immediate care. [GPP]

Consideration should be given to the possibility of other types of diabetes (such as early-onset type 2 diabetes, other insulin resistance syndromes, maturity-onset diabetes in the young and molecular/enzymatic abnormalities) in children and young people with suspected type 1 diabetes who:

• have a strong family history of diabetes
• are obese at presentation
• are of Black or Asian origin
• have an insulin requirement of less than 0.5 units/kg body weight/day outside a partial remission phase
• have no insulin requirement
• rarely or never produce ketone bodies in the urine (ketonuria) during episodes of hyperglycaemia
• show evidence of insulin resistance (for example, acanthosis nigricans)
• have associated features, such as eye disease, deafness, or another systemic illness or syndrome. [GPP]

Children and young people with type 1 diabetes should be entered on a population-based, practice-based and/or clinic-based diabetes register. [GPP]

3.2. Management from diagnosis

Children and young people with type 1 diabetes should be offered an ongoing integrated package of care by a multidisciplinary paediatric diabetes care team. To optimise the effectiveness of care and reduce the risk of complications, the diabetes care team should include members with appropriate training in clinical, educational, dietetic, lifestyle, mental health and foot care aspects of diabetes for children and young people. [GPP]

Children and young people with type 1 diabetes and their families should be offered 24-hour access to advice from the diabetes care team. [GPP]

Children and young people with type 1 diabetes and their families should be involved in making decisions about the package of care provided by the diabetes care team. [GPP]

At the time of diagnosis, children and young people with type 1 diabetes should be offered home-based or inpatient management according to clinical need, family circumstances and wishes, and residential proximity to inpatient services. Home-based care with support from the local paediatric diabetes care team (including 24-hour telephone access to advice) is safe and as effective as inpatient initial management. [A]

Children and young people who present with diabetic ketoacidosis should have their diabetic ketoacidosis treated in hospital according to the guidance outlined in this document. [D]

Children with type 1 diabetes who are younger than 2 years of age and children and young people who have social or emotional difficulties, or who live a long way from hospital should be offered inpatient initial management. [GPP]

Children and young people with type 1 diabetes and their families should be offered appropriate emotional support following diagnosis, which should be tailored to emotional, social, cultural and age-dependent needs. [GPP]

3.3. Natural history of type 1 diabetes

Children and young people with newly diagnosed type 1 diabetes should be informed that they may experience a partial remission phase (or ‘honeymoon period’) during which a low dosage of insulin (0.5 units/kg body weight/day) may be sufficient to maintain an HbA1c level of less than 7%. [D]

Children and young people with type 1 diabetes should be informed that the use of multiple daily insulin injection regimens or continuous subcutaneous insulin infusion (or insulin pump therapy) will not prolong the partial remission phase, although these forms of therapy may be appropriate for optimising glycaemic control, especially in young people. [A]

3.4. Essential education at diagnosis

Children and young people with newly diagnosed type 1 diabetes should be offered a structured programme of education covering the aims of insulin therapy, delivery of insulin, self-monitoring of blood glucose, the effects of diet, physical activity and intercurrent illness on glycaemic control, and the detection and management of hypoglycaemia. [D]

4.1. Education

Children and young people with type 1 diabetes and their families should be offered timely and ongoing opportunities to access information about the development, management and effects of type 1 diabetes. The information provided should be accurate and consistent and it should support informed decision making. [GPP]

Children and young people with type 1 diabetes and their families should be offered opportunities to discuss particular issues and to ask questions at each clinic visit. [GPP]

The method of delivering education and content will depend on the individual and should be appropriate for the child's or young person's age, maturity, culture, wishes and existing knowledge within the family. [GPP]

Particular care should be given to communication and the provision of information when children and young people with type 1 diabetes and/or their parents have special needs, such as those associated with physical and sensory disabilities, or difficulties in speaking or reading English. [GPP]

4.2. Insulin regimens

Pre-school and primary school children with type 1 diabetes should be offered the most appropriate individualised regimens to optimise their glycaemic control. [C]

Young people with type 1 diabetes should be offered multiple daily injection regimens to help optimise their glycaemic control. [A]

Multiple daily injection regimens should be offered only as part of a package of care that involves continuing education, dietary management, instruction on the use of insulin delivery systems and blood glucose monitoring, emotional and behavioural support, and medical, nursing and dietetic expertise in paediatric diabetes, because this improves glycaemic control. [C]

Children and young people using multiple daily injection regimens should be informed that they may experience an initial increase in the risk of hypoglycaemia and short-term weight gain. [B]

Children and young people with type 1 diabetes and their families should be informed about strategies for the avoidance and management of hypoglycaemia. [C]

Young people who do not achieve satisfactory glycaemic control with multiple daily injection regimens should be offered additional support and, if appropriate, alternative insulin therapy (once-, twice- or three-times daily mixed insulin regimens or continuous subcutaneous insulin infusion using an insulin pump). [GPP]

Young people with type 1 diabetes who have difficulty adhering to multiple daily injection regimens should be offered twice-daily injection regimens. [GPP]

Continuous subcutaneous insulin infusion (or insulin pump therapy) is recommended as an option for people with type 1 diabetes provided that:

• multiple-dose insulin therapy (including, where appropriate, the use of insulin glargine) has failed;* and
• those receiving the treatment have the commitment and competence to use the therapy effectively.

*People for whom multiple-dose therapy has failed are considered to be those for whom it has been impossible to maintain an HbA1c level no greater than 7.5% (or 6.5% in the presence of microalbuminuria or adverse features of the metabolic syndrome) without disabling hypoglycaemia occurring, despite a high level of self-care of their diabetes. ‘Disabling hypoglycaemia’, for the purpose of this guidance, means the repeated and unpredicted occurrence of hypoglycaemia requiring third-party assistance that results in continuing anxiety about recurrence and is associated with significant adverse effect on quality of life. [NICE TA]

Continuous subcutaneous insulin infusion therapy should be initiated only by a trained specialist team, which should normally comprise a physician with a specialist interest in insulin pump therapy, a diabetes specialist nurse and a dietitian. [NICE TA]

All individuals beginning continuous subcutaneous insulin infusion therapy should be provided with specific training in its use. Ongoing support from a specialist team should be available, particularly in the period immediately following the initiation of continuous subcutaneous insulin infusion. It is recommended that specialist teams should agree a common core of advice appropriate for continuous subcutaneous insulin infusion users. [NICE TA]

Established users of continuous subcutaneous insulin infusion therapy should have their insulin management reviewed by their specialist team so that a decision can be made about whether a trial or a switch to multiple-dose insulin incorporating insulin glargine would be appropriate. [NICE TA]

4.3. Insulin preparations

Children and young people with type 1 diabetes should be offered the most appropriate insulin preparations (rapid-acting insulin analogues, short-acting insulins, intermediate-acting insulins, long-acting insulin analogues or biphasic insulins) according to their individual needs and the instructions in the patient information leaflet supplied with the product with the aim of obtaining an HbA1c level of less than 7.5% without frequent disabling hypoglycaemia and maximising quality of life. [GPP]

Children and young people with type 1 diabetes using multiple daily insulin regimens should be informed that injection of rapid-acting insulin analogues before eating (rather than after eating) reduces postprandial blood glucose levels and thus helps to optimise blood glucose control. [B]

For pre-school children with type 1 diabetes it may be appropriate to use rapid-acting insulin analogues shortly after eating (rather than before eating) because food intake can be unpredictable. [GPP]

Children and young people with type 1 diabetes who use insulin preparations containing intermediate-acting insulin should be informed that these preparations should be mixed before use according to the instructions in the patient information leaflet supplied with the product. [GPP]

4.4. Methods of delivering insulin

Children and young people with type 1 diabetes should be offered a choice of insulin delivery systems that takes account of their insulin requirements and personal preferences. [GPP]

Children and young people with type 1 diabetes using insulin injection regimens should be offered needles that are of an appropriate length for their body fat (short needles are appropriate for children and young people with less body fat; longer needles are appropriate for children and young people with more body fat). [GPP]

4.5. Non-insulin agents (oral antidiabetic drugs)

Children and young people with type 1 diabetes should not be offered acarbose or sulphonylureas (glibenclamide, gliclazide, glipizide, tolazamide or glyburide) in combination with insulin because they may increase the risk of hypoglycaemia without improving glycaemic control. [A]

Metformin in combination with insulin is suitable for use only within research studies because the effectiveness of this combined treatment in improving glycaemic control is uncertain. [A]

4.6. Monitoring glycaemic control

Children and young people with type 1 diabetes and their families should be informed that the target for long-term glycaemic control is an HbA1c level of less than 7.5% without frequent disabling hypoglycaemia and that their care package should be designed to attempt to achieve this. [A]

Children and young people with type 1 diabetes should be offered testing of their HbA1c levels two to four times per year (more frequent testing may be appropriate if there is concern about poor glycaemic control). [D]

Current HbA1c measurements should be made available in outpatient clinics because their availability can lead to immediate changes in insulin therapy and/or diet and so reduce the need for follow-up appointments. [D]

Children and young people with type 1 diabetes and their families should be informed that aiming to achieve low levels of HbA1c can lead to increased risks of hypoglycaemia and that high levels of HbA1c can lead to increased risks of long-term microvascular complications. [A]

Children and young people with HbA1c levels consistently above 9.5% should be offered additional support by their diabetes care teams to help them improve their glycaemic control because they are at increased risk of developing diabetic ketoacidosis and long-term complications. [B]

Children and young people with type 1 diabetes should be encouraged to use blood glucose measurements for short-term monitoring of glycaemic control because this is associated with reduced levels of glycated haemoglobin. Urine glucose monitoring is not recommended because it is less effective and is associated with lower patient satisfaction. [A]

Children and young people with type 1 diabetes and their families should be informed that the optimal targets for short-term glycaemic control are a preprandial blood glucose level of 4–8 mmol/l and a postprandial blood glucose level of less than 10 mmol/l. [D]

Children and young people with type 1 diabetes and their families should be encouraged to perform frequent blood glucose monitoring as part of a continuing package of care that includes dietary management, continued education and regular contact with their diabetes care teams. [C]

Children and young people with type 1 diabetes and their families should be offered a choice of appropriate equipment for undertaking monitoring of capillary blood glucose to optimise their glycaemic control in response to adjustment of insulin, diet and exercise. [GPP]

Children and young people using multiple daily injection regimens should be encouraged to adjust their insulin dose if appropriate after each preprandial, bedtime and occasional night-time blood glucose measurement. [D]

Children and young people using twice-daily injection regimens should be encouraged to adjust their insulin dose according to the general trend in preprandial, bedtime and occasional night-time blood glucose measurements. [D]

Children and young people with type 1 diabetes who are trying to optimise their glycaemic control and/or have intercurrent illness should be encouraged to measure their blood glucose levels more than four times per day. [GPP]

Children and young people with type 1 diabetes and their families should be informed that blood glucose levels should be interpreted in the context of the ‘whole child’, which includes the social, emotional and physical environment. [GPP]

Children and young people with type 1 diabetes who have persistent problems with hypoglycaemia unawareness or repeated hypoglycaemia or hyperglycaemia should be offered continuous glucose monitoring systems. [B]

Children and young people with type 1 diabetes should be offered blood glucose monitors with memories (as opposed to monitors without memories) because these are associated with improved patient satisfaction. [B]

Children and young people with type 1 diabetes should be encouraged to use a diary in conjunction with a blood glucose monitor because recording food intake and events such as intercurrent illness can help to reduce the frequency of hypoglycaemic episodes. [GPP]

4.7. Diet

Children and young people with type 1 diabetes should be offered appropriate dietetic support to help optimise body weight and glycaemic control. [C]

Children and young people with type 1 diabetes and their families should be informed that they have the same basic nutritional requirements as other children and young people. The food choices of children and young people should provide sufficient energy and nutrients for optimal growth and development, with total daily energy intake being distributed as follows:

• carbohydrates – more than 50%
• protein – 10–15%
• fat – 30–35%. [D]

The consumption of five portions of fruit and vegetables per day is also recommended. Neonates, infants and pre-school children require individualised dietary assessment to determine their energy needs. [D]

Children and young people with type 1 diabetes should be encouraged to develop a good working knowledge of nutrition and how it affects their diabetes. [GPP]

Children and young people with type 1 diabetes and their families should be informed of the importance of healthy eating in reducing the risk of cardiovascular disease (including foods with a low glycaemic index, fruit and vegetables, and types and amounts of fats), and means of making appropriate nutritional changes in the period after diagnosis and according to need and interest at intervals thereafter. [GPP]

Children and young people with type 1 diabetes should be encouraged to consider eating a bedtime snack. The nutritional composition and timing of all snacks should be discussed with the diabetes care team. [B]

Children and young people using multiple daily injection regimens should be offered education about insulin and dietary management as part of their diabetes care package, to enable them to adjust their insulin dose to reflect their carbohydrate intake. [C]

Children and young people with type 1 diabetes should be offered education about the practical problems associated with fasting and feasting. [GPP]

4.8. Exercise

All children and young people, including those with type 1 diabetes, should be encouraged to exercise on a regular basis because this reduces the risks of developing macrovascular disease in the long term. [B]

Children and young people with type 1 diabetes and their families should be informed that they can participate in all forms of exercise, provided that appropriate attention is given to changes in insulin and dietary management. [GPP]

Children and young people with type 1 diabetes wishing to participate in restricted sports (such as scuba diving) should be offered comprehensive advice by their diabetes care teams. Additional information may be available from local and/or national patient support groups and organisations. [GPP]

Children and young people with type 1 diabetes and their families should be informed about the effects of exercise on blood glucose levels and about strategies for preventing exercise-induced hypoglycaemia during and/or after physical activity. [C]

Children and young people with type 1 diabetes should be encouraged to monitor their blood glucose levels before and after exercise so that they can:

• identify when changes in insulin or food intake are necessary
• learn the glycaemic response to different exercise conditions
• be aware of exercise-induced hypoglycaemia
• be aware that hypoglycaemia may occur several hours after prolonged exercise. [D]

Children and young people with type 1 diabetes, their parents and other carers should be informed that additional carbohydrate should be consumed as appropriate to avoid hypoglycaemia and that carbohydrate-based foods should be readily available during and after exercise. [D]

Children and young people with type 1 diabetes, their parents and other carers should be informed that additional carbohydrate should be consumed if blood glucose levels are less than 7 mmol/l before exercise is undertaken. [GPP]

Children and young people with type 1 diabetes and their families should be informed that changes in their daily exercise patterns may require insulin dose and/or carbohydrate intake to be altered. [GPP]

Children and young people with type 1 diabetes, their parents and other carers should be informed that exercise should be undertaken with caution if blood glucose levels are greater than 17 mmol/l in the presence of ketosis. [GPP]

4.9. Alcohol, smoking and recreational drugs

Young people with type 1 diabetes should be informed about the specific effects of alcohol consumption on glycaemic control, particularly the risk of (nocturnal) hypoglycaemia. [C]

Young people with type 1 diabetes should be offered alcohol education programmes. [GPP]

Young people with type 1 diabetes who drink alcohol should be informed that they should:

• eat food containing carbohydrate before and after drinking
• monitor their blood glucose levels regularly and aim to keep the levels within the recommended range by eating food containing carbohydrate. [GPP]

Children and young people with type 1 diabetes and their families should be informed about general health problems associated with smoking and in particular the risks of developing vascular complications. [B]

Children and young people with type 1 diabetes should be encouraged not to start smoking. [GPP]

Children and young people with type 1 diabetes who smoke should be offered smoking cessation programmes. [GPP]

Children and young people with type 1 diabetes and their families should be informed about the general dangers of substance misuse and the possible effects on glycaemic control. [GPP]

4.10. Long-distance travel

Children and young people with type 1 diabetes and their families should be offered education about the practical issues related to long-distance travel, such as when best to eat and inject insulin when travelling across time zones. [GPP]

4.11. Immunisation

Children and young people with type 1 diabetes and their families should be informed that the Department of Health recommends annual immunisation against influenza for children and young people with diabetes over the age of 6 months. [D]

Children and young people with type 1 diabetes and their families should be informed that the Department of Health recommends immunisation against pneumococcal infection for children and young people with diabetes over the age of 2 months. [D]

5.1. Hypoglycaemia

Children and young people with type 1 diabetes, their parents and other carers should be informed that they should always have access to an immediate source of carbohydrate (glucose or sucrose) and blood glucose monitoring equipment for immediate confirmation and safe management of hypoglycaemia. [D]

Children and young people, their parents, schoolteachers and other carers should be offered education about the recognition and management of hypoglycaemia. [D]

Children and young people with type 1 diabetes should be encouraged to wear or carry something that identifies them as having type 1 diabetes (for example, a bracelet). [D]

Children and young people with mild to moderate hypoglycaemia should be treated as follows.

• Take immediate action.
• The first line of treatment should be the consumption of rapidly absorbed simple carbohydrate (for example, 10–20 g carbohydrate given by mouth).
• The simple carbohydrate should raise blood glucose levels within 5–15 minutes.
• Carbohydrate given in liquid form may be taken more easily.
• It may be appropriate to give small amounts of rapidly absorbed simple carbohydrate frequently because hypoglycaemia may cause vomiting.
• As symptoms improve or normoglycaemia is restored additional complex long-acting carbohydrate should be given orally to maintain blood glucose levels unless a snack or meal is imminent.
• Additional complex long-acting carbohydrate is not required for children and young people using continuous subcutaneous insulin infusion.
• Blood glucose levels should be rechecked within 15 minutes. [GPP]

Children and young people with severe hypoglycaemia should be treated as follows.

• In a hospital setting, 10% intravenous glucose should be used when rapid intravenous access is possible (up to 500 mg/kg body weight – 10% glucose is 100 mg/ml).
• Outside hospital, or where intravenous access is not practicable, intramuscular glucagon or concentrated oral glucose solution (for example, Hypostop®) may be used.
• Children and young people over 8 years old (or body weight more than 25 kg) should be given 1 mg glucagon.
• Children under 8 years old (or body weight less than 25 kg) should be given 500g glucagon.
• Blood glucose levels should respond within 10 minutes.
• As symptoms improve or normoglycaemia is restored, in children and young people who are sufficiently awake, additional complex long-acting carbohydrate should be given orally to maintain blood glucose levels.
• Some children and young people may continue to have reduced consciousness for several hours after a severe hypoglycaemic episode, and repeat blood glucose
• measurements will be required to determine whether further glucose is necessary.
• Medical assistance should be sought for children and young people whose blood glucose levels fail to respond and those in whom symptoms persist for more than 10 minutes. [GPP]

Parents and, where appropriate, school nurses and other carers should have access to glucagon for subcutaneous or intramuscular use in an emergency, especially when there is a high risk of severe hypoglycaemia. [D]

Parents and, where appropriate, school nurses and other carers should be offered education on the administration of glucagon. [D]

Children and young people with type 1 diabetes and their families should be informed that when alcohol causes or contributes to the development of hypoglycaemia, glucagon may be ineffective in treating the hypoglycaemia and intravenous glucose will be required. [GPP]

5.2. Diabetic ketoacidosis

Children and young people with diabetic ketoacidosis should be treated according to the guidelines published by the British Society for Paediatric Endocrinology and Diabetes. [D]

Children and young people with diabetic ketoacidosis should be managed initially in a high-dependency unit or in a high-dependency bed on a children's ward. [D]

Children and young people with deteriorating consciousness or suspected cerebral oedema and those who are not responding appropriately to treatment should be managed in a paediatric intensive care unit. [D]

Children with diabetic ketoacidosis who are younger than 2 years of age should be managed in a paediatric intensive care unit. [D]

Children and young people with a blood pH of less than 7.3 (hydrogen ion concentration of more than 50 nmol/l), but who are clinically well (with no tachycardia, vomiting, drowsiness, abdominal pain or breathlessness) and less than 5% dehydrated, may respond appropriately to oral rehydration, frequent subcutaneous insulin injections and monitoring of blood glucose. [D]

5.3. Surgery

Children and young people with type 1 diabetes should be offered surgery only in centres that have dedicated paediatric facilities for the care of children and young people with diabetes. [D]

Careful liaison between surgical, anaesthetic and diabetes care teams should occur before children and young people with type 1 diabetes are admitted to hospital for elective surgery and as soon as possible after admission for emergency surgery. [D]

All centres caring for children and young people with type 1 diabetes should have written protocols concerning the safe management of children and young people during surgery. The protocols should be agreed between surgical and anaesthetic staff and the diabetes care team. [D]

5.4. Intercurrent illness

Children and young people with type 1 diabetes and their families should be offered clear guidance and protocols (‘sick-day rules’) for the management of type 1 diabetes during intercurrent illness. [D]

Children and young people with type 1 diabetes should have short-acting insulin or rapid-acting insulin analogues and blood and/or urine ketone testing strips available for use during intercurrent illness. [GPP]

5.5. Screening for complications and associated conditions

Children and young people with type 1 diabetes should be offered screening for:

• coeliac disease at diagnosis [C]
• and at least every 3 years thereafter until transfer to adult services [GPP]
• thyroid disease at diagnosis and annually thereafter until transfer to adult services [C]
• retinopathy annually from the age of 12 years [C]
• microalbuminuria annually from the age of 12 years [C]
• blood pressure annually from the age of 12 years. [C]

Routine screening for elevated blood lipid levels and/or neurological function is not recommended for children and young people with type 1 diabetes. [C]

Children and young people with type 1 diabetes should be offered:

• annual foot care reviews [GPP]
• investigation of the state of injection sites at each clinic visit. [C]

Children and young people with type 1 diabetes and their families should be informed that, as for other children, regular dental examinations and eye examinations (every 2 years) are recommended. [D]

Children and young people with type 1 diabetes should have their height and weight measured and plotted on an appropriate growth chart and their body mass index calculated at each clinic visit. The purpose of measuring and plotting height and weight and calculating body mass index is to check for normal growth and/or significant changes in weight because these may reflect changing glycaemic control. [GPP]

Children and young people with type 1 diabetes should have their height and weight measured in a private room. [D]

The following complications, although rare, should be considered at clinic visits:

• juvenile cataracts
• necrobiosis lipoidica
• Addison's disease. [GPP]

6.1. Emotional and behavioural problems

Diabetes care teams should be aware that children and young people with type 1 diabetes have a greater risk of emotional and behavioural problems than other children and young people. [C]

6.2. Anxiety and depression

Diabetes care teams should be aware that children and young people with type 1 diabetes may develop anxiety and/or depression, particularly when difficulties in self-management arise in young people and children who have had type 1 diabetes for a long time. [B]

Children and young people with type 1 diabetes who have persistently poor glycaemic control should be offered screening for anxiety and depression. [GPP]

Children and young people with type 1 diabetes and suspected anxiety and/or depression should be referred promptly to child mental health professionals. [GPP]

6.3. Eating disorders

Diabetes care teams should be aware that children and young people with type 1 diabetes, in particular young women, have an increased risk of eating disorders. [C]

Diabetes care teams should be aware that children and young people with type 1 diabetes who have eating disorders may have associated problems of persistent hyperglycaemia, recurrent hypoglycaemia, and/or symptoms associated with gastric paresis. [C]

Children and young people with type 1 diabetes in whom eating disorders are identified by their diabetes care team should be offered joint management involving their diabetes care team and child mental health professionals. [GPP]

6.4. Cognitive disorders

Parents of pre-school children with type 1 diabetes should be informed that persistent hypoglycaemia, in particular in association with seizures, is associated with a small but definite risk of long-term neurocognitive dysfunction. [C]

Diabetes care teams should consider referring children and young people with type 1 diabetes who have frequent hypoglycaemia and/or recurrent seizures for assessment of cognitive function, particularly if these occur at a young age. [GPP]

6.5. Behavioural and conduct disorders

Children and young people with type 1 diabetes who have behavioural or conduct disorders, and their families, should be offered access to appropriate mental health professionals. [GPP]

6.6. Non-adherence

Non-adherence to therapy should be considered in children and young people with type 1 diabetes who have poor glycaemic control, especially in adolescence. [B]

Non-adherence to therapy should be considered in children and young people with established type 1 diabetes who present with diabetic ketoacidosis, especially if the diabetic ketoacidosis is recurrent. [B]

Young people with ‘brittle diabetes’ (that is, those who present with frequent episodes of diabetic ketoacidosis over a relatively short time) should have their emotional and psychological wellbeing assessed. [GPP]

The issue of non-adherence to therapy should be raised with children and young people and their families in a sensitive manner. [GPP]

6.7. Psychosocial support

Diabetes care teams should be aware that poor psychosocial support has a negative impact on a variety of outcomes of type 1 diabetes in children and young people, including glycaemic control and self-esteem. [C]

Children and young people with type 1 diabetes, especially young people using multiple daily injection regimens, should be offered structured behavioural intervention strategies because these may improve psychological wellbeing and glycaemic control. [A]

Young people with type 1 diabetes should be offered specific support strategies, such as mentoring and self-monitoring of blood glucose levels supported by problem solving, to improve their self-esteem and glycaemic control. [A]

Families of children and young people with type 1 diabetes should be offered specific support strategies (such as behavioural family systems therapy) to reduce diabetes-related conflict between family members. [A]

Children and young people with type 1 diabetes and their families should be offered timely and ongoing access to mental health professionals because they may experience psychological disturbances (such as anxiety, depression, behavioural and conduct disorders and family conflict) that can impact on the management of diabetes and wellbeing. [GPP]

Diabetes care teams should have appropriate access to mental health professionals to support them in the assessment of psychological dysfunction and the delivery of psychosocial support. [GPP]

6.8. Adolescence

Diabetes care teams should be aware that adolescence can be a period of worsening glycaemic control, which may in part be due to non-adherence to therapy. [B]

7.1. Communication between organisations

Children and young people with type 1 diabetes and their families should be offered information about the existence of and means of contacting local and/or national diabetes support groups and organisations, and the potential benefits of membership. This should be done in the time following diagnosis and periodically thereafter. [GPP]

Diabetes care teams should liaise regularly with school staff involved in supervising children and young people with type 1 diabetes to offer appropriate diabetes education and practical information. [GPP]

Teaching staff should be informed about the potential effects of type 1 diabetes on cognitive function and educational attainment. [GPP]

Children and young people with type 1 diabetes and their families should be advised how to obtain information about benefits in relation to government disability support. [GPP]

7.2. Transition from paediatric to adult care

Young people with type 1 diabetes should be encouraged to attend clinics on a regular basis (three or four times per year) because regular attendance is associated with good glycaemic control. [D]

Young people with type 1 diabetes should be allowed sufficient time to familiarise themselves with the practicalities of the transition from paediatric to adult services because this has been shown to improve clinic attendance. [GPP]

Specific local protocols should be agreed for transferring young people with type 1 diabetes from paediatric to adult services. [GPP]

The age of transfer to the adult service should depend on the individual's physical development and emotional maturity, and local circumstances. [GPP]

Transition from the paediatric service should occur at a time of relative stability in the individual's health and should be coordinated with other life transitions. [D]

Paediatric diabetes care teams should organise age-banded clinics for young people and young adults jointly with their adult specialty colleagues. [D]

Young people with type 1 diabetes who are preparing for transition to adult services should be informed that some aspects of diabetes care will change at transition. The main changes relate to targets for short-term glycaemic control and screening for complications. [GPP]

4/1. Education

Further research is needed to evaluate the effectiveness of age-specific structured education programmes covering all aspects of care in children and young people with type 1 diabetes, their families and other carers.

Further research is needed to evaluate the effectiveness of education programmes in which young people with type 1 diabetes provide training for their peers.

Further research is needed to determine the most effective way of training healthcare professionals to provide education about type 1 diabetes in children and young people.

4.2. Insulin regimens

Research is needed to compare the effectiveness of multiple daily injection regimens with twice-daily injection regimens in children and young people with type 1 diabetes.

Research is needed to compare the effectiveness of continuous subcutaneous insulin infusion (or insulin pump therapy) and multiple daily injection regimens in children and young people with type 1 diabetes.

4.3. Insulin preparations

Research is needed to evaluate the effectiveness of long-acting insulin analogues in children and young people with type 1 diabetes.

Further research is needed to evaluate the effectiveness of once-daily injection regimens in children and young people with type 1 diabetes, and especially in pre-school children.

4.4. Methods of delivering insulin

Further research is required to evaluate the effectiveness of insulin delivery systems in children and young people with type 1 diabetes.

Research is needed to compare the effectiveness of insulin delivery modes (for example, dermal, nasal, oral and pulmonary) in children and young people with type 1 diabetes.

4.5. Non-insulin agents (oral antidiabetic drugs)

Further research is needed to evaluate the effectiveness of metformin combined with insulin treatment in children and young people with type 1 diabetes.

4.6. Monitoring glycaemic control

Research is needed to investigate the clinical implications of alternative site monitoring (for example, the arm as opposed to the finger) in children and young people with type 1 diabetes.

Research is needed to evaluate the clinical effectiveness of the routine use of invasive and non-invasive continuous glucose monitoring systems for optimising glycaemic control in children and young people with type 1 diabetes.

4.7. Diet

Further research is needed to evaluate the effectiveness of training in flexible, intensive insulin management to enable children and young people with type 1 diabetes to adjust insulin doses to match carbohydrate intake.

5.2. Diabetic ketoacidosis

Further research is needed to evaluate the role of blood ketone monitoring in preventing diabetic ketoacidosis in children and young people with type 1 diabetes.

Further research is needed to investigate the effectiveness of different concentrations of rehydration fluid, the rate of rehydration, the use of albumin infusion and the dose of insulin infusion in the management of diabetic ketoacidosis in children and young people.

5.3. Screening for complications and associated conditions

Further research is needed to evaluate the effectiveness of screening for cardiovascular risk factors in children and young people with type 1 diabetes.

6.4. Cognitive disorders

Further research is needed to evaluate the effects of persistent hypoglycaemia and recurrent diabetic ketoacidosis on neurocognitive function.

6.8. Adolescence

Further studies are needed to evaluate the effectiveness of behavioural and social interventions on anxiety and depression, eating disorders, behavioural and conduct disorders, and adherence to therapy in children and young people with type 1 diabetes, especially in adolescence, from diagnosis and in established diabetes.

7.1. Communication between organisations

Further research is needed to evaluate the effects of low blood glucose levels on learning, attendance at school and educational attainment.

7.2. Transition from paediatric to adult care

Further research is needed to investigate young people's experiences of transition from paediatric to adult services for people with type 1 diabetes.

Frequency of self-monitoring of blood glucose testing

In a systematic review that looked at the effectiveness of self-monitoring in people with type 1 diabetes, the frequency of self-monitoring was not discussed directly.²⁹¹ [evidence level Ia] However, we found three studies that examined the frequency of self-monitoring of blood glucose.

One RCT investigated three blood glucose monitoring regimens over three 12-week periods (n=25 adults). The study compared a four-point profile on any two non-consecutive days/week versus one four-point profile on any day of the week versus two blood glucose measurements on each day for 7 days/week. There was no significant difference in glucose control or patient preference among the different regimens. However, the frequency of insulin regimen changes was increased when a four-point profile on any two nonconsecutive days/week was compared with one four-point profile on any day of the week (p <0.02).³¹⁷ [evidence level Ib]

An RCT involving young people (n=30) performing self-monitoring of blood glucose compared young people who were paid to attend the study clinic with young people who were paid to attend the clinic in relation to how many days they had performed two or more blood glucose tests. The study lasted 16 weeks and showed an increase in the percentage of days blood glucose was monitored twice with the patient being paid in relation to how many days they had performed two blood glucose tests (∼80% versus 58%). However, the study did not report any significant changes in mean blood glucose concentrations, mean SD of blood glucose concentrations, or mean glycated haemoglobin concentration.³²⁶ [evidence level Ib]

A non-randomised intervention study looked at blood glucose testing four or more times/day compared with twice/day for patients using CSII, multiply daily injections and a combination of CSII and multiple daily injections for a period of 1 year (n=21, age range 15–36 years). The mean blood glucose concentration did not change significantly in any of the treatment groups. HbA1 was significantly lower when the patients performed glucose testing four or more times/day compared with twice/day. This was seen in the groups who used CSII, multiply daily injections and a combination of CSII and multiple daily injections (CSII group who previously tested at least four times/day: 7.9 ±0.4% versus 10.3 ±0.5%, p <0.0001; CSII group who previously tested two times/day: 8.2 ±0.4% versus 10.2 ±0.5%, p=0.0476; multiple daily injection group who previously tested at least four times/day: 8.1 ±0.4% versus 10.0 ±0.9%, p=0.0008; CSII and multiple daily injections combined: 8.2 ±0.3% versus 10.3 ±0.3%, p <0.0001).³²⁷ [evidence level IIb]

General

Guidelines for the treatment of children and young people with diabetic ketoacidosis have been published by the British Society for Paediatric Endocrinology and Diabetes (available at http://www.bsped.org.uk/BSPEDDKAApr04.pdf).⁵⁰² [evidence level IV] These guidelines, which are which are reproduced in Appendix D, are an updated version of earlier guidelines for the treatment of diabetic ketoacidosis in children and young people that were published jointly by Diabetes UK and the British Society for Paediatric Endocrinology and Diabetes. The current guidelines take account of recently published consensus statements developed by the European Society for Paediatric Endocrinology and the Lawson Wilkins Pediatric Endocrine Society.⁵⁰³ [evidence level IV] The guidelines highlight the need for further research to investigate the effectiveness of different concentrations of rehydration fluid, the rate of rehydration and the concentration of insulin infusion in the management of diabetic ketoacidosis.

A Department of Health Expert Advisory Group has proposed guidelines for the provision of high dependency care for children and young people (available at www.dh.gov.uk/assetRoot/04/03/ 42/73/04034273.pdf).⁵⁰⁵ [evidence level IV]

Monitoring

A consensus statement on monitoring diabetic ketoacidosis in children and young people has recommended that hour-by-hour clinical observations, intravenous and oral medication, fluids and laboratory results should be documented throughout the treatment period.503 [evidence level IV]

Monitoring should include:⁵⁰³ [evidence level IV]

• hourly heart rate, respiratory rate and blood pressure
• hourly, or more frequent, fluid input and output (with the possibility of urinary catheterisation where there is impaired consciousness)
• electrocardiogram monitoring to assess T-waves for evidence of hyperkalaemia/hypokalaemia in severe diabetic ketoacidosis
• hourly capillary blood glucose monitoring (to be cross-checked against laboratory venous glucose)
• laboratory testing of electrolytes, urea, haematocrit, blood glucose and blood gases every 2–4 hours (with hourly monitoring of electrolytes in more severe cases)
• hourly, or more frequent, neurological observations for warning signs and symptoms of cerebral oedema, including headache, inappropriate slowing of heart rate, recurrent vomiting, changes in neurological status (restlessness, irritability, increased drowsiness, incontinence) or specific neurological signs (such as cranial nerve palsies and papillary response), rising blood pressure and decreased oxygen saturation.

It may be difficult to discriminate cerebral oedema from other causes of altered mental status and so those who perform monitoring should be instructed to alert the physician should any of the warning signs and symptoms be thought to have occurred.503 [evidence level IV]

Fluid and salt

A retrospective study showed that decreasing the amount of fluid given in the first 24 hours, from 5.1 l/m2/24 hours to 4.35 l/m2/24 hours increased the time taken for acidosis to be resolved (16.7 ±8.4 hours versus 12.6 ±4.1 hours, p=0.01), although the rate of cerebral oedema was not affected.⁵⁰⁶ [evidence level III]

A consensus statement on diabetic ketoacidosis in children and young people concerning water and salt replacement made the following recommendations.⁵⁰³ [evidence level IV]

• Water and salt deficiencies should be replaced, taking into account intravenous or oral fluids that may have been given before treatment and prior to assessment.
• Initial intravenous fluid administration and, if required, volume expansion, should start immediately with an isotonic solution (0.9% saline or balanced salt solutions such as Ringer-Lactate solution), the volume and rate of administration depending on circulatory status. The volume is typically 10–20 ml/kg over 1–2 hours, repeated if necessary.
• Crystalloid (not colloid) should be used.
• Subsequent fluid management should be with a solution with a tonicity equal to or greater than 0.45% saline (by administering 0.9% saline, Ringer-Lactate solution or 0.45% saline with added potassium). The rate of intravenous fluid should be calculated to rehydrate evenly over at least 48 hours.
• In addition to clinical assessment of dehydration, calculation of effective osmolality may help to guide fluid and electrolyte therapy.
• Fluid should be infused each day at a rate not usually exceeding 1.5–2 times the usual daily requirement according to age, weight, or body surface area. Urinary losses should not be added to the calculation of replacement fluids.

Insulin therapy

Insulin administered by an initial bolus as well as continuous insulin infusion has been compared with continuous insulin infusion only in an RCT involving children and young people (n=38, 58 episodes). There was no significant difference in serum glucose concentration after 1 hour of treatment.⁵⁰⁷ [evidence level Ib]

Continuous versus intermittent insulin therapy for diabetic ketoacidosis was evaluated in a study involving adults (n=26). Insulin was administered as bolus injections (50 units/2 hours), compared with high-dose continuous insulin infusion (10 units/hour), and low-dose continuous insulin infusion (2 units/hour) after an initial loading dose (3 units). There was no significant difference between high-dose continuous infusion and bolus injection in the time to diabetic ketoacidosis recovery (measured by normalisation of blood glucose, bicarbonate, ketone bodies and pH). However, low-dose continuous infusion resulted in a higher blood glucose level after 6 hours of treatment compared with bolus injections and high-dose continuous insulin infusion (serum glucose: 284 ±36 mg/100 ml with bolus injections; 297 ±34 mg/100 ml with continuous insulin infusion; 392 ±84 mg/100 ml with low-dose continuous infusion; p <0.05).⁵⁰⁸ [evidence level Ib]

Continuation of insulin administration past the usual cut-off point of near-normoglycaemia was investigated in adults in one study (n=22). Continuation of insulin was shown to decrease the time taken for resolution of ketosis (measured as duration of elevated blood 3-hydroxybutyrate levels: 5.9 ±0.8 hours versus 21.8 ±3.4 hours, RR 0.30, 95% CI 0.16 to 0.54, p=0.0004).⁵⁰⁹ [evidence level Ib]

Human and porcine insulins were compared in an RCT involving adults (n=21). No significant differences in recovery rates were seen following the administration of human and porcine insulins for treatment of diabetic ketoacidosis.⁵¹⁰ [evidence level Ib]

Insulin therapy routes

Intramuscular administration of insulin (0.1 units/kg body weight every 2 hours) was compared with a combination of subcutaneous and intravenous administration (0.05 units/kg body weight given subcutaneously every 4 hours and 0.05 units/kg body weight given intravenously every 4 hours in a small study involving children and young people, n=10).

There was no significant difference between the treatment groups in terms of the time needed to achieve serum glucose <6.46 mmol/l.⁵¹¹ [evidence level IIa]

Insulin administration routes were also evaluated in an RCT involving adults (n=45). No significant differences were seen for time to metabolic recovery or total insulin dose or fluid replacement requirements in intravenous, intramuscular and subcutaneous insulin administration. A significantly higher rate of decrease in glucose and ketone bodies was observed in the first 2 hours following intravenous insulin, but this difference was not maintained over the rest of the recovery period.⁵¹² [evidence level Ib]

Administration routes of low doses of insulin were evaluated in an RCT involving adults (n=30).The RCT showed that low doses of insulin given by intermittent intramuscular injection or by constant intravenous infusion after an initial intravenous loading dose were similarly effective in controlling diabetic ketoacidosis. Time to recovery from diabetic ketoacidosis and total insulin dose required did not differ between the two treatment groups.⁵¹³ [evidence level Ib]

Insulin dose

Clinical consensus has suggested a starting dose of 0.1 units/kg/hour.⁵⁰² [evidence level IV] Some health professionals have expressed the opinion, not substantiated by clinical evidence, that a lower dose (0.05 units/kg/hour) may be safer, reducing the risk of cerebral oedema. It may therefore be prudent to consider a low dose of insulin in pre-school children and consider reducing from a high to a low dose of insulin if there is a rapid fall in blood glucose.

A consensus statement on diabetic ketoacidosis in children and young people concerning insulin therapy recommends the following.⁵⁰³ [evidence level IV]

• Insulin should be delivered intravenously. If this is not possible, the intramuscular or subcutaneous route of insulin administration can be used, but poor perfusion may impair absorption of insulin.
• Intravenous insulin should be commenced at 0.1 units/kg/hour.
• The dose of insulin should be adjusted thereafter with the resolution of ketoacidosis (pH >7.30, HCO3>15 mmol/l and/or closure of anion gap) and with the optimisation of blood glucose.

An unduly rapid decrease in plasma glucose concentration and possible development of hypoglycaemia can be prevented by adding glucose to the intravenous fluid when plasma glucose falls to approximately 14–17 mmol/l (250–300 mg/dl).

If there is no improvement in biochemical parameters of ketoacidosis (pH, anion gap), the patient should be reassessed, insulin therapy should be reviewed, and other causes of impaired response to insulin (such as infection, errors in insulin preparation, and adhesion of insulin to tubing with very dilute solutions) should be considered.

Bicarbonate

The use of intravenous bicarbonate together with insulin therapy for treatment of diabetic ketoacidosis was investigated in an RCT involving adults (n=20). The study showed that intravenous sodium bicarbonate therapy increased recovery of arterial pH and bicarbonate levels in the first 2 hours (7.24 ±0.04 versus 7.11 ±0.09, p <0.02, 95% CI 0.06 to 0.19), but did not affect pCO2 or blood glucose levels. All patients in the bicarbonate group developed hypokalaemia.⁵¹⁴ [evidence level lb]

The effects on diabetic ketoacidosis recovery rates of two different intravenous bicarbonate doses, adjusted to initial arterial pH, and a placebo were investigated in a study involving adults (n=21). There were no significant differences between patients treated with bicarbonate and placebo in terms of the rates of decline of glucose and ketone levels in blood and cerebrospinal fluid, or in the times required for plasma glucose to reach <13.9 mmol/l (converted from 250 mg/dl reported in the study), blood pH to reach 7.3 (hydrogen ion concentration 50 nmol/l), and bicarbonate levels to reach 15 mmol/l.515 [evidence level Ib]

A consensus guideline suggested that bicarbonate is rarely, if ever, necessary. Continuing acidosis usually means insufficient resuscitation. Bicarbonate should only be considered in children who are profoundly acidotic (pH <7.0) and shocked with circulatory failure. Its only purpose is to improve cardiac contractility in severe shock.⁵⁰² [evidence level IV]

A consensus statement on diabetic ketoacidosis in children and young people concerning bicarbonate therapy concluded that treatment with bicarbonate provided no clinical benefit and that although resuscitation fluids containing various buffering agents (bicarbonate, acetate, lactate) have been used, the efficacy and safety of these agents have not been established.⁵⁰³ [evidence level IV]

Potassium

A consensus statement on diabetic ketoacidosis in children and young people concluded that potassium replacement is required and that replacement therapy should be based on serum potassium measurements. Potassium replacement should begin immediately in patients who are hypokalaemic, although it should be started at the same time as insulin therapy in other patients. In hyperkalaemic patients, potassium replacement should be delayed until urine output is documented. An initial concentration of potassium in the infusate of 40 mmol/l should be used and potassium replacement should continue throughout intravenous fluid therapy.⁵⁰³ [evidence level IV]

Phosphate therapy

Two RCTs have examined the addition of phosphate therapy to insulin treatment for diabetic ketoacidosis.

The first RCT involved adults (n=30) and showed no significant differences in the rates of decline of glucose and ketone bodies after phosphate treatment. A protective effect against hypophosphataemia was observed, but only on the first day of treatment.⁵¹⁶ [evidence level Ib]

The second RCT involved patients aged 14–58 years (n=44) and provided no evidence of a clinical benefit of phosphate therapy.⁵¹⁷ [evidence level Ib]

A consensus statement on diabetic ketoacidosis in children and young people concluded that: there was no evidence for a clinical benefit of phosphate replacement, but that severe hypophosphataemia should be treated; potassium phosphate salts may be used with or instead of potassium chloride/acetate; and administration of phosphate may induce hypocalcaemia.

Provided that careful monitoring is performed to avoid hypocalcaemia, potassium phosphate may be safely used in combination with potassium chloride or acetate to avoid hyperchloraemia. ⁵⁰³ [evidence level IV]

Somatostatin therapy

An RCT investigated the addition of the somatostatin analogue octreotide to low-dose insulin therapy in adults (n=23). This study showed that octreotide reduced the time taken for correction of ketonuria. However, there were no such effects on the recovery rates from hyperglycaemia and acidosis.⁵¹⁸ [evidence level Ib]

General behavioural interventions

A systematic review of 18 behavioural interventions (education or skills training) compared with standard care found that theoretical behavioural interventions had a small to moderate beneficial effect (effect size 0.47 ±0.60) in improving psychosocial, self-management and metabolic outcomes.⁶⁴⁰ [evidence level Ia–IIa]

More specifically, an RCT has shown a beneficial effect of coping skills training combined with intensive insulin therapy compared with intensive insulin therapy regimen alone on quality of life, coping with diabetes, wellbeing and monthly HbA1c in people aged 12–20 years. Outcomes were measured at study entry and after 3, 6 and 12 months of follow-up (n=65, 77 and 75, respectively).^641–643 [evidence level Ib] Coping skills training aimed to retrain inappropriate or non-constructive coping styles and form more positive behaviour patterns. Over a 12-month period, intensive insulin therapy improved glycaemic control (p <0.01). Intensive therapy combined with coping skills training, however, was more effective than intensive therapy alone (HbA1c at 12 months: 7.5% versus 8.5%, p=0.011).

Another RCT compared the effectiveness of behavioural family systems therapy (n=38) with an education and support group (n=40) and a control group of current therapy (n=41) in young people with type 1 diabetes and their families.^644,645 [evidence level Ib] Metabolic control, parent–adolescent relationship, parent–child conflict and teen adjustment to diabetes were assessed at study entry and after 3, 6 and 12 months of follow-up (n=119 families). Baseline differences in family structure were evident between groups and 73% of the participants had HbA1clevels above 10%.⁶⁴⁴ [evidence level Ib] After receiving behavioural family systems therapy, education and support, or current therapy for 3 months, there was evidence of a significant effect for all groups on mean change in family composite scores (overt conflict and skills deficits) in parent–adolescent relationship assessment. Composite scores favoured behavioural family systems therapy recipients in decreasing diabetes-specific conflict between children and young people and their parents (p=0.05). Total HbA1c values increased significantly over the study period for all groups (p <0.05). The behavioural family systems therapy group had a lasting improvement in the extreme beliefs scale of parent–adolescent relationship (p <0.01), while overt conflict and skills deficits between parents and teenagers showed improvement for the behavioural family systems therapy group compared with the current therapy group post-treatment (p <0.03) and at 6 months follow-up (p <0.05). Composite behavioural family systems therapy scores in parent–child conflict measurement differed from the other groups at post-treatment (p <0.04) and 6 months (p <0.05). This difference only remained when compared with the current therapy group (p <0.05) at 12 months follow-up. There were no significant between-group differences for teenagers' adjustment to diabetes outcomes.

Family support

A consensus-based guideline has stated that the diabetes care team or a healthcare professional trained in child/family therapy should provide support for explicit psychological problems or psychiatric disorders among young patients or their family members.¹⁵ [evidence level IV] An evidence-based guideline has encouraged parental support and family communication, with psychological intervention targeting family disruption and stress.⁹ [evidence level IV]

RCTs have studied interventions employed to improve outcomes associated with the disruptive effects that diabetes has on family life. Interventions that have been tested include family-to-family networks, community-based family support, behavioural family systems therapy, teamwork intervention, attention control, education and support groups. Outcome measures that have been studied are glycaemic control, diabetes-related conflict, parental involvement in management, children's and young people's adjustment to diabetes care, and parents' anxiety levels.^646–649

Families participating in an attention control and teamwork group trial (n=57) reported a greater decrease in diabetes-specific conflict than did recipients of standard care (n=24) after 24 months of follow-up (p <0.03).⁶⁴⁶ [evidence level Ib] However, glycaemic control was not improved significantly in the intervention group (p <0.07). The intervention group had less parental involvement in the administration of insulin (p <0.03).

Young people and their families reporting conflict were randomised into a behavioural family systems therapy group (n=39), an education/support group (n=40), or a control group (n=40). Diabetes conflict scores decreased more in mothers whose children received behavioural family systems therapy compared with other groups (p <0.05). However, there were no significant changes in diabetes conflict scores in any of the treatment groups.⁶⁴⁷ [evidence level Ib]

Mothers of chronically ill children (aged 7–11 years, 40% of whom had type 1 diabetes) were randomised into a community-based family support group (n=73) or a control group (n=66) to examine changes in their wellbeing over 15 months.⁶⁴⁸ [evidence level Ib] Community-based family support improved wellbeing in mothers with elevated baseline anxiety and poor health status (p <0.001 and p <0.01). Community-based family support reduced maladjustment scores in the children from 19% to 10%, whereas maladjustment scores increased from 15% to 21% in the control group. However, community-based family support had no effect on children's anxiety, depression, or self-esteem.

A cohort study examined the effectiveness of 10 half-hour sessions of home-based behavioural family systems therapy on general psychological functioning of young people, family functioning, and mothers' diabetes-associated conflict scores.⁶⁵⁰ [evidence level IIb] Inclusion criteria for participants were a history of two or more missed clinic appointments and chronically poor metabolic control. This small study (n=18, age range 13–18 years) found significant improvements in psychological and family functioning.

An observational study described helpful and non-helpful forms of support as reported by 16 young people (age range 11–18 years) and their parents.⁶⁵¹ [evidence level III] Parents defined responses of helpful support as directive guidance, non-directive support, positive social interaction and forms of physical assistance. Young people described helpful support as that which related to parents giving or not giving tangible assistance and non-helpful support as directive guidance.

Peer support

Social support systems aim to foster positive and informed health-related choices for young people with chronic conditions. A narrative review examined 32 studies that assessed the types of social support used to enhance metabolic control in young people with type 1 diabetes.⁶⁵² [evidence level IV] The types of support were qualitative family support (18 studies), regimen-specific support (11 studies), sibling and peer support (6 studies), and communication (2 studies).

An RCT aimed at improving adolescent diabetes management by implementing mentoring/sponsorship programmes for young people aged 12–16 years consisted of a range of social and educational activities (n=54). The young people were randomised to receive bimonthly contact from adult mentors with type 1 diabetes or no mentoring.⁶⁵³ [evidence level Ib] Young people with mentors were less likely to agree with statements such as ‘I wish I didn't have diabetes’ and demonstrated significant increases in self-esteem in relation to social acceptance and romantic appeal (p <0.05). Mean glycosylated haemoglobin levels decreased in young people with mentors compared with those without.⁶⁵³ [evidence level Ib]

The effect on glycaemic control of self-monitoring of blood glucose supported by problem solving was assessed in an RCT: 30 young people (aged 11–14 years) with type 1 diabetes who received the problem solving support were compared with 30 young people with type 1 diabetes who did not receive the problem solving support.⁶⁵⁴ [evidence level Ib] HbA1 levels followed over 18 months were lower in the intervention group than in the control group (10.1 ±2.0% versus 11.0 ±2.3%, p=0.04). The intervention group used self-monitored blood glucose measurements more often when exercising than the young people with type 1 diabetes who did not receive the problem solving support (60.0% versus 33.3%, p=0.04).

Home-based intervention was assessed in 21 children and young people (age range 8–17 years) over 15 months.⁶⁵⁵ [evidence level IIb] Children and young people in the intervention group chose three people from their family, peers, neighbourhood or school to participate in a support scheme. Children and young people with lower glycaemic levels received more support from team peers (r=−0.50, p <0.05). Perceptions of peer support were not correlated with glycaemic control, self-reported adherence, or the number of support team peers participating in the intervention.

Another study paired 21 young people with diabetes with their best friends and invited them to attend a 4-week intervention programme.⁶⁵⁶ [evidence level IIb] The study reported higher levels of diabetes knowledge and support (p <0.0001) and a higher ratio of peer-to-family support (p <0.05) compared with pre-intervention measurements. Friends reported improved self-perception post-intervention (p <0.0001), and parents reported a decrease in diabetes-related conflict at home (p <0.05). Peers provided more support than family members.

Pre-school and primary school children

For a pre-school or primary school child, the insulin pattern should be individually designed to suit the specific needs of the child.

Multiple daily injection regimens

A young person or child who is using a multiple daily injection regimen should be warned that, at first, they may find that they become hypoglycaemic more often, put on a bit of weight, or both.

Young people (11 or older) should be able to try a multiple daily injection regimen (see box above) to keep their glucose levels under control. But they should only try this as part of a ‘package’ of care, because having the whole package improves glucose control. This package should include:

• continuing education about diabetes
• help with diet
• being taught how to use insulin delivery systems and how to monitor their own blood glucose levels (known as ‘self-monitoring’)
• support for emotional problems or to overcome difficult behaviour patterns
• help from doctors, nurses and dietitians with expert knowledge about diabetes in young people.

If a young person finds it hard to keep their blood glucose levels under control with a multiple daily injection regimen, they should be offered extra help from the diabetes care team and, if it is appropriate, they should be offered a different insulin regimen (one, two or three times a day or insulin pump therapy).

If a young person finds it difficult to keep to the multiple injection regimen, they should be able to change to two insulin injections a day.

Using rapid-acting analogues

For children and young people using multiple daily insulin injections, injecting a rapid-acting insulin analogue before eating helps with glucose control. For pre-school children, it may be better to inject it shortly after they've eaten, just in case they don't actually eat their food.

Insulin pumps

Sometimes it's impossible to keep to the target HbA1cwithout having problems with hypoglycaemia, even with multiple daily injections (see ‘Checking blood glucose’ on page 139 for more information on HbA1c). In this case, a child or young person should be offered the option of trying an insulin pump (a system that puts a regular or continuous amount of insulin into the body), if the diabetes care team and the child or young person and their family feel that that they are able, and want, to use the system.

If a child or young person is going to try a pump, they should be trained how to use it. A trained specialist team should be involved in starting them off with the pump, and should provide advice if it's needed once the pump is being used. After a person has been using a pump for a while, the specialist team should see whether it might be a good idea to try a switch to multiple daily injections that include insulin glargine (a long-acting insulin analogue).

What to aim for

Self-monitoring of blood glucose measures the amount of glucose in the blood as ‘mmol/litre’ (mmol/litre is pronounced ‘milli mole per litre’). The diabetes care team should explain that the aim of self-monitoring is to get a blood glucose level of 4-8 mmol/litre before a meal, and less than 10 mmol/litre after a meal. Remember, this is different from the HbA1c test – self-monitoring of blood glucose is a measure of how much glucose there is in the blood at the moment, whereas HbA1c is a measure of how well blood glucose has been controlled in the last few months.

To try to keep to the targets, children and young people should be taught how to adjust their insulin and diet. How often someone should check their blood glucose depends on their individual circumstances.

Diabetes care teams should encourage children and young people who have multiple daily insulin injections to check their blood glucose before meals, at bedtime and occasionally at night-time and to adjust their insulin if they need to. Children and young people who have two insulin injections a day should be encouraged to take measurements before meals, at bedtime and occasionally at night-time and to look at the general pattern (‘trend’) and adjust their insulin dose if they need to.

For someone who is trying to work out the best way to control their blood glucose, it's a good idea to check the levels more than four times a day. If a child or young person is unwell, they should also check their blood glucose more than four times a day.

Glucose results need to be thought about in the light of what's going on in the child or young person's world at that time, and diabetes care teams should explain this. Many different things can affect glucose control – for example, stress because of exams or moving schools can have an effect.

Emotional problems and difficult behaviour

Having type 1 diabetes can make a child or young person more likely to have an emotional problem or to behave in a way that's difficult to manage than others of their age. The diabetes care team should be aware of this and should look out for signs that problems might be developing.

If a child or young person has a disorder that's making them behave in a difficult way, they and their families should be able to see mental health professionals who can help them.

Anxiety and depression

Children and young people with type 1 diabetes can suffer from anxiety, depression or both. This may happen if, for example, they've had type 1 diabetes for a while but suddenly seem to have problems keeping their glucose levels under control. The diabetes care team should know the signs of anxiety and depression and should watch out for them in the children and young people they look after. Also, if a child or young person has problems keeping their blood glucose levels under control, their team should discuss anxiety and depression with them and should offer them the chance to be checked for signs of these.

If the diabetes team thinks a child or young person may have anxiety or depression, they should arrange without delay for them to see one or more health professionals who specialise in helping children and young people with mental health problems.

Eating disorders

Children and young people with type 1 diabetes, especially young women, are more likely to develop an eating disorder than others. If a child or young person does have an eating disorder, they may also have problems with hyperglycaemia, repeated spells of hypoglycaemia, and symptoms linked with a condition called gastric paresis, which is where the stomach doesn't empty food into the intestine properly. The diabetes care team should be aware of these things. If they think a child or young person has an eating disorder, they should arrange for them to see one or more health professionals who specialise in helping children and young people with mental health problems. These health professionals should then work with the diabetes care team to help the child or young person.

Problems with memory and thoughts

Young (pre-school) children who have very frequent severe hypoglycaemia have a chance of developing problems with their memory and thought processes. This risk is small, but is especially linked to children who have hypoglycaemia that causes seizures. The diabetes care team should discuss this with parents. They may recommend having an assessment of the child's ability to think clearly and to remember things (this ability is called cognitive function).

Teachers should be aware of the links between type 1 diabetes and possible problems with cognitive function.