Quality standard

Quality statement 2: Education and information

Quality statement

Children and young people with type 1 or type 2 diabetes are offered a programme of diabetes education from diagnosis that is updated at least annually.

Rationale

Education is essential in enabling self-management of diabetes and reducing the chance of complications. It should start at diagnosis and continue throughout a person's life. It is important to focus education on core topics and tailor it to the individual needs and learning styles of the child or young person and their family members or carers (as appropriate).

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

a) Evidence of local arrangements and written protocols to ensure that children and young people with type 1 diabetes are offered a programme of diabetes education from diagnosis that is updated at least annually.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

b) Evidence of local arrangements and written protocols to ensure that children and young people with type 2 diabetes are offered a programme of diabetes education from diagnosis that is updated at least annually.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

Process

a) Proportion of children and young people with type 1 diabetes who are offered a programme of diabetes education from diagnosis that is updated at least annually.

Numerator – the number in the denominator who receive a programme of diabetes education from diagnosis that is updated at least annually.

Denominator – the number of children and young people with type 1 diabetes.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

b) Proportion of children and young people with type 2 diabetes who are offered a programme of diabetes education from diagnosis that is updated at least annually.

Numerator – the number in the denominator who receive a programme of diabetes education from diagnosis that is updated at least annually.

Denominator – the number of children and young people with type 2 diabetes.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

Outcome

a) Quality of life of children and young people with type 1 or type 2 diabetes.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by provider organisations, for example from patient satisfaction surveys.

b) HbA1c level of 48 mmol/mol or lower.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

c) Satisfaction of children, young people and their family members or carers (as appropriate) with the education intervention.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. Included in the Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit.

What the quality statement means for different audiences

Service providers (secondary care diabetes services for children and young people) ensure that systems are in place to offer children and young people with type 1 or type 2 diabetes and their family members or carers (as appropriate) a programme of diabetes education from diagnosis that is tailored to their individual needs and learning styles and updated at least annually.

Healthcare professionals (such as those providing diabetes services for children and young people) offer children and young people with type 1 or type 2 diabetes and their family members or carers (as appropriate) a programme of diabetes education from diagnosis that is tailored to their individual needs and learning styles and updated at least annually.

Commissioners commission services that offer children and young people with type 1 or type 2 diabetes and their family members or carers (as appropriate) a programme of diabetes education from diagnosis that is updated at least annually.

Children and young people with type 1 or type 2 diabetes and their family members or carers are offered a programme of diabetes education when they are diagnosed with diabetes. This education should continue throughout their life and be updated every year.

The programme should teach them what they need to know about their condition and what changes they might need to make now that they have diabetes. This includes clear advice (designed specifically for each child or young person) on what to do when they are ill or have high blood glucose levels.

Source guidance

Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE guideline NG18 (2015, updated 2023), recommendations 1.2.1, 1.2.2, 1.2.82, 1.3.2 and 1.3.3

Definitions of terms used in this quality statement

Programme of diabetes education (type 1 diabetes)

A continuing programme of education that is age appropriate, tailored to need and revisited at least annually. The following core topics should be included from diagnosis:

  • insulin therapy, including its aims, how it works, how to take it and how to adjust the dosage

  • blood glucose monitoring, including continuous glucose monitoring, blood glucose and HbA1c targets, and time-in-range targets

  • how diet, physical activity and intercurrent illness affect blood glucose levels

  • managing intercurrent illness ('sick‑day rules', including monitoring of blood ketones [beta‑hydroxybutyrate])

  • detecting and managing hypoglycaemia, hyperglycaemia and ketosis

  • the importance of good oral hygiene and regular oral health reviews for preventing periodontitis.

[Adapted from NICE's guideline on diabetes (type 1 and type 2) in children and young people, recommendations 1.2.1, 1.2.2 and expert opinion]

Programme of diabetes education (type 2 diabetes)

A continuing programme of education that is age appropriate, tailored to need and revisited at least annually. The following core topics should be included from diagnosis:

  • the importance of managing glucose levels, including achieving and maintaining glucose and HbA1c targets

  • how and when to take capillary blood glucose measurements (self-monitoring)

  • how diet, increasing physical activity and reducing body weight can reduce the symptoms of type 2 diabetes and lead to remission

  • how diet, physical activity, body weight and intercurrent illness affect blood glucose levels

  • how metformin can help, and its possible adverse effects

  • the complications of type 2 diabetes and how to prevent them.

The importance of regular oral health reviews should also be included. [Adapted from NICE's guideline on diabetes (type 1 and type 2) in children and young people, recommendation 1.3.2, 1.3.3, 1.3.91 and expert opinion]

Equality and diversity considerations

Children and young people with diabetes and their family members or carers (as appropriate) should be provided with information that they can easily read and understand themselves, or with support, so they can communicate effectively with health and social care services. Information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and it should be culturally appropriate and age appropriate. People should have access to an interpreter or advocate if needed.

For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.