Professor Jerry Wales reviews NICE Guideline 18 on type 1 and type 2 diabetes in children and young people, and the importance of prompt diagnosis and appropriate treatment

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Read this article to learn more about:

  • the differences in the management of type 1 versus type 2 diabetes in children and young people
  • the importance of achieving good glycaemic control for the prevention of long-term complications
  • the need for appropriate education for both the patient and their family.

Key points

GP commissioning messages

Type 1 diabetes in the young person is becoming more common and, since 2004 when the first UK cases were recognised, type 2 diabetes is also increasing in frequency. Around 24,000 children and young people (CYP) in the UK with type 1 diabetes were identified by the National Diabetes Audit in 2012–13, compared with around 450 CYP identified with type 2 diabetes.1 So, in the absence of other features (see below), type 1 diabetes should be assumed (see Box 2, Below).

NICE Guideline 18 on Diabetes (type 1 and type 2) in children and young people—diagnosis and management (see Box 1, below) was published in August 2015.2 This updated guidance contains advice on the management of type 2 diabetes in CYP for the first time.

Box 1: NICE Accreditation Mark

NICE Guideline 18 on Diabetes (type 1 and type 2) in children and young people: diagnosis and management has been awarded the NICE Accreditation Mark.

This Mark identifies the most robustly produced guidance available. See for further details.

Box 2: Diagnosis of type 1 diabetes2

The characteristics of type 1 diabetes in children and young people include:

  • hyperglycaemia (random plasma glucose more than 11 mmol/L)
  • polyuria (secondary nocturnal enuresis is a 'red-flag' symptom)
  • polydipsia
  • weight loss
  • excessive tiredness.

In the presence of these signs and symptoms, if the plasma glucose level is above 11 mmol/L in a child or young person without known diabetes, immediately send them to a hospital with acute paediatric facilities.

NICE (2015) NG18. Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE, 2015. Available at:
Reproduced with permission

Much of the management of type 2 diabetes by the diabetes team in secondary care is similar to that of type 1 diabetes. However, the initial treatment is different; the increased risk of renal complications in particular, and of problems such as hypertension and dyslipidaemia associated with the accompanying excess weight and obesity in type 2 require separate guidance, which has been included for the first time.2

Type 2 diabetes diagnosed at <18 years of age has a worse prognosis than type 1 diabetes—it is not a 'mild form of the disease'.3

A variety of monogenic disorders (such as maturity-onset diabetes of the young [MODY]), mitochondrial disorders, and other conditions (such as cystic fibrosis-related diabetes [CFRD]) may also lead to diabetes in early life,4 but the care of these diverse conditions was beyond the scope of the guideline. Maturity-onset diabetes of the young is actually more common than type 2 diabetes,5 accounting for possibly 2% of total cases of diabetes in the young, and is often misdiagnosed.6 It should be suspected if there is diabetes in several generations not associated with autoimmunity, in patients having a normal body mass index (BMI) with no acanthosis.6,7

Diagnosis of MODY offers the possibility of oral treatment or, in the case of glucokinase deficiency, merely yearly observation or discharge to primary care.8 Monogenic disorders should be suspected if diabetes occurs in the first year of life if:2

  • there is protection from ketosis
  • there are associated signs such as eye abnormalities, deafness, neurological or syndromic features.

Genetic testing may be indicated here.

What does NICE Guideline 18 recommend?

Diabetes in CYP is a chronic condition that affects the life of those with the condition as well as their family and carers, and education and access to psychological support are both required.2 The need for provision of psychological support was highlighted in the previous 2004 guideline but has, disappointingly, not been widely implemented.9 Eventual transition to adult services is required and, as far as possible, the updated NICE Guideline 18 has been aligned with the adult type 1 guidance10 published concurrently.2

Need for tighter blood glucose targets in type 1 diabetes
Since the initial guidance was published in 2004, there have been major changes in the routine management of type 1 diabetes with an attempt to achieve much stricter targets for blood glucose control to further reduce the long-term risks associated with the condition.2

There was evidence from international audits and cohort studies that the most important factor influencing overall control achieved by a clinical team was to have an agreed message and targets delivered in a consistent manner.11 The lower the 'expected' target glycosylated haemoglobin (HbA1c), the more likely it was that good control would be achieved.12 There is anecdotal evidence that the less strict targets of 69 mmol/mol (HbA1c  8.5%) recommended in the USA led to poorer overall control than in Europe, where a level of 59 mmol/mol (HbA1c  7.5%) was recommended by the International Society for Paediatric and Adolescent Diabetes (ISPAD).13

The updated UK guidance recommends attempting to achieve an HbA1c in the normal range 48 mmol/mol or less (<6.5%) and near normoglycaemia (4–7 mmol/L pre meals and 5–9 mmol/L post prandially).2 Teenagers learning to drive should follow the recommended '5 to drive' advice2.

The guideline development group felt that it is possible to achieve this tight control by intensive insulin management (multiple daily injections or insulin pump therapy) from diagnosis, accompanied by carbohydrate counting. Newer technology such as continuous glucose monitoring sensors (CGMS) may also help some selected children and young people to achieve better control.2 Recently available CGMS with predictive suspend to prevent hypoglycaemia—where an algorithm allows prediction of impending hypoglycaemia from the trend in CGMS values, and temporarily turns off the pump—shows great promise,14 but requires a technology appraisal.

The patient and family preferences for insulin regimen and use of technology should always be considered, and appropriate training provided. Continuous glucose monitoring sensors, for example, only show a benefit in those who commit to using the sensors almost full time, and pump treatment requires frequent blood testing and bolus calculation to be successful.15 However, the long-term benefits of good control in preventing the retinal, renal, and cardiovascular complications of diabetes should be explained to all families and patients.

The above suggested tight goals may provoke conflict within the family, especially from adolescents, and this is a time when enhanced psychological support is vital. Compromise on targets may be required, with frequent updates according to circumstance.

The adjustment of rapid-acting insulin dose according to carbohydrate ingested should be taught from the onset of diabetes in all children receiving the recommended intensive insulin treatments. This requires the appropriate dietetic resource within the team in the first week after diagnosis and frequent review and re-education of the patient thereafter.

Preventing and treating hypoglycaemia
There were few changes in the recommendations for the prevention and treatment of hypoglycaemia, which should be treated immediately with 10–20 g fast-acting carbohydrate (non-diet sweet drink or glucose tablets/gel). Blood glucose should be rechecked after 15 minutes and treatment repeated if hypoglycaemia persists. Complex carbohydrate should then be eaten as a snack or a meal. In severe hypoglycaemia resulting in unconsciousness or fits, family members or carers (for example, where appropriate, school nurses) should be trained and equipped to give intramuscular glucagon.2

All the routine care for type 1 diabetes recommended in the guidance should be delivered by a multidisciplinary team working to standards described in the Paediatric Diabetes Best Practice Tariff.16

Type 1 diabetes—education and screening
Education of the patient and family by the team, updated regularly, is clearly vital in a disorder where the majority of care is self-directed. Teams should offer children and young people with type 1 diabetes, and their family members or carers, a continuing programme of education from diagnosis. The programme should include the following core topics:2

  • insulin therapy, including its aims, how it works, its mode of delivery and dosage adjustment
  • blood glucose monitoring, including targets for blood glucose control
  • the effects of diet, physical activity, and inter-current illness on blood glucose control
  • managing inter-current illness ('sick-day rules', including monitoring of blood ketones)
  • detecting and managing hypoglycaemia, hyperglycaemia, and ketosis
  • the addresses of local and national support groups and how to claim appropriate benefits.

The Education programme must be tailored to each child and young person with diabetes and their family/carers after discussion, taking account of issues such as personal preferences, emotional wellbeing, age and maturity, cultural and linguistic considerations, existing knowledge, current and future social circumstances, and life goals.2 It may not be appropriate, for instance, to aim for near normoglycaemia in a young patient with poorly controlled seizures. The HbA1c goals and targets may change with time depending on personal circumstances and preferences.2

For type 1 diabetes, there were few changes to the recommendations for screening for complications related to glucose control. Retinal screening within the National Screening programme should commence at 12 years of age, along with measurement of blood pressure and albumin:creatinine ratio, ideally in a first morning urine sample.

Thyroid disease should be screened for at diagnosis and then yearly,2 and the NICE recommendations for coeliac disease suggest screening for type 1 diabetes at diagnosis.17 This is a controversial area, as experience from diabetes teams suggests that around a third of cases of coeliac disease present after the diagnosis of diabetes.18 Certainly, any child with diabetes and gastrointestinal (GI) symptoms should have the diagnosis of coeliac disease revisited.

Diagnosis and treatment of type 2 diabetes
Type 2 diabetes should be suspected in the presence of a family history of type 2 diabetes, ethnic risk, and signs of insulin resistance such as acanthosis nigricans.2 The higher the BMI, the greater the risk of type 2 diabetes and the majority of Caucasian children with type 2 diabetes have a BMI in the morbidly obese category.19 The evidence concerning the best treatment strategies for type 2 diabetes that occurs before 18 years of age is sparse. Clearly, lifestyle interventions to reduce weight—ideally in the pre-diabetic phase—are paramount.

The guidance on obesity management in the young published by NICE (Clinical Guideline 189)20 should inform the approach, but may include bariatric surgery, which could cure type 2 diabetes.21 Metformin is the only drug that has an evidence base in the young, and should be used early (again, in the pre-diabetic phase if recognised).2 The condition is rare enough to suggest that cases should be recorded separately and all treatment, other than metformin, should take place only within a controlled clinical trial.2 Because renal disease, in particular, occurs early in the course of type 2 diabetes, screening for complications (other than retinopathy—usually from 12 years) should start at diagnosis.2

Box 3: Recognition of diabetic ketoacidosis2

Measure capillary blood glucose at presentation in children and young people without known diabetes who have increased thirst, polyuria, recent unexplained weight loss, or excessive tiredness and any of the following:

  • nausea or vomiting
  • abdominal pain
  • hyperventilation
  • dehydration
  • reduced level of consciousness.

If the plasma glucose level is above 11 mmol/L in a child or young person without known diabetes, and they have symptoms that suggest diabetic ketoacidosis (DKA), suspect DKA and immediately send them to a hospital with acute paediatric facilities.

Children and young people taking insulin for diabetes may develop DKA with normal blood glucose levels. When DKA is suspected in a child or young person with known diabetes measure the blood ketones (beta-hydroxybutyrate), using a near-patient method if available. If the level is elevated, or if blood-ketone testing is not available, immediately send them to a hospital with acute paediatric facilities.

DKA=diabetic ketoacidosis
NICE (2015) NG18. Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE, 2015. Available at:
Reproduced with permission

Managing diabetic ketoacidosis
NICE Guideline 18 also contains new advice on the recognition and treatment of diabetes and diabetic ketoacidosis (DKA). As DKA can be fatal in children, CYP with suspected type 1 diabetes must be referred immediately (on the same day) to a multidisciplinary paediatric diabetes team with the competencies needed to confirm diagnosis and to provide immediate care (see Box 2 and Box 3, above).2 There is no place for performing tests for glucose tolerance, HbA1c, or antibodies prior to referral.2

There are also new recommendations for the management of DKA and prevention of cerebral oedema for in-hospital care. Clearly, there can be few randomised controlled trials for emergency treatment, so observational studies and consensus guidance, with the help of a paediatric intensivist, was used as the basis for the guideline changes. For those interested, an algorithm for acute management and fluid calculations is available separately from the NICE guidance.11,22

Key priorities for implementation

There are ten areas listed within NG18 as key priorities for implementation:2

  • provide education and information for CYP with type 1 and type 2 diabetes, especially if there are comorbidities or if English is a second language
  • offer intensive insulin therapy to CYP with type 1 diabetes from diagnosis
  • offer carbohydrate-counting education from diagnosis to CYP with type 1 diabetes who are using intensive insulin therapy
  • advise CYP with type 1 diabetes and their family members or carers to carry out a minimum of five capillary blood tests per day—more are needed at times of ill health or changes in routine
    • offer CGMS if there is frequent, severe hypoglycaemia or impaired awareness of hypoglycaemia
    • aim for near normoglycaemia and an HbA1c  <6.5% (48 mmol/mol) to minimise the risk of long-term complications
  • offer CYP with type 1 diabetes ketone testing strips and meter—to be used as part of routine sick-day management
  • offer psychological and social support to CYP with type 1 or type 2 diabetes and their families/carers
  • recognise the particular risk of diabetic kidney disease and other complications in CYP with type 2 diabetes
  • recognise diabetes and diabetic ketoacidosis early and immediately refer the patient to a hospital team.

Future directions

The guideline development group was able to recommend five areas where further research is required:

  • peer-led education programmes for young people with type 1 diabetes are available in some centres, but there is little evidence of their efficacy
  • the optimal upper limit and timing for blood glucose measurements after meals are not clear; advice is currently given for between 30 minutes to 2–3 hours post meals—the guidance suggests 9 mmol/L post-prandially is a reasonable target, but this is based on very little evidence
  • extended-release metformin preparations are often prescribed in an attempt to reduce GI side-effects, but there have been no trials in young people. The use of dietary advice based on glycaemic index, fat, and protein counting is controversial and requires further studies
  • the optimal dosage of intravenous insulin for managing diabetic ketoacidosis in CYP is unknown. There has been a recent trend towards using 0.05 units/kg/hr instead of 0.1 units/kg/hr, but safety data are lacking.


Much of the care of diabetes in CYP is delivered by specialist teams in specialised units. Prompt recognition and referral of diabetes may prevent death and will allow initiation of dietary and insulin treatment in a controlled manner. The guideline development group felt the guidance was ambitious in attempting to implement strict blood glucose control with the help of modern regimens and, where appropriate, technology.

However, if adequately resourced and implemented from diagnosis, the tools exist to allow these future goals to be achieved in the majority of children. These improvements, if made, will reduce the impact of the condition on the future health of CYP.

Key points

  • Prompt recognition of diabetes and DKA is essential, followed by immediate referral to a secondary care team
  • Intensive insulin treatment and carbohydrate counting should be started at diagnosis
  • Provide educational, psychological, nursing, and dietetic support to allow families to achieve tight control (near normoglycaemia)
  • Provide enough test strips for the chosen meter to allow a minimum of five tests a day (many more during illness, when blood ketone testing is also required)
  • Consider new technologies such as CGMS for selected individuals to allow them to meet tight control targets
  • Be aware that type 2 diabetes is rare in young people, but consider in the presence of ethnic risk, family history, obesity, and acanthosis nigricans.

DKA=diabetic ketoacidosis; CGMS=continuous glucose monitoring sensors

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GP commissioning messages

written by Dr David Jenner, NHS Alliance GMS contract/PBC Lead

  • There is a BPT of £2895 for a 'Year of care' for paediatric diabetes outpatient care from the first admission for diagnosis to the age of 19 years subject to the provider meeting defined standards (in the PbR guidance)
  • This payment also covers the cost of any inpatient admissions for diabetes, thereby incentivising providers to manage children proactively to help avoid unnecessary emergency admissions
  • Commissioners should help define systems to validate that the conditions required of the BPT have been met and the guidance suggests that patient and public involvement is used in this validation
  • Compliance with all criteria will need to be demonstrated for at least 90% of patients attending the clinic for payment of the BPT
  • If a child is admitted as an emergency for diabetes to an alternative hospital than that providing the outpatient care under the BPT then the host provider should be billed by the admitting hospital
  • Diabetes in children requires early diagnosis in primary care and prompt referral to specialist care especially for initial diagnosis. Under the BPT, providers must deliver 24-hour telephone advice to both the patient and attending health professionals

BPT=best practice tariff; PbR=Payment by Results

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