Introduction

This quality standard covers the diagnosis and management of type 1 and type 2 diabetes in children and young people aged under 18. This quality standard will not cover care for children and young people with other forms of diabetes mellitus (such as monogenic diabetes or cystic fibrosis‑related diabetes). Management of diabetes in women aged under 18 who are planning pregnancy or already pregnant is covered by the NICE guideline and quality standard on diabetes in pregnancy.

For more information see the diabetes in children and young people topic overview.

Why this quality standard is needed

Diabetes is a long‑term condition that can have a major impact on the life of a child or young person, as well as their family or carers. In addition to insulin therapy, diabetes management should include education, support and access to psychological services. Preparations should also be made for the transition from paediatric to adult services, which have a different model of care and evidence base.

Type 1 diabetes is becoming more common in the UK, and since 2004 type 2 diabetes is also being diagnosed with increasing frequency. The 2013–14 National Paediatric Diabetes Audit identified 26,364 children and young people with type 1 diabetes and 533 with type 2 diabetes. Much of the general care for type 2 diabetes is the same as for type 1 diabetes, although the initial management is different.

Since 2004 there have been major changes to the routine management of type 1 diabetes in an attempt to achieve much stricter targets for blood glucose control, to further reduce the long‑term risks associated with the condition. NICE's guideline on diabetes in children and young people is the first national guidance for children and young people to recommend attempting to reach a glycated haemoglobin (HbA1c) level near the normal range and near normoglycaemia. This tight control may be achieved by intensive insulin management (multiple daily injections or insulin pump therapy) from diagnosis, accompanied by carbohydrate counting. Newer technology such as continuous subcutaneous glucose monitoring may also help children and young people to achieve better blood glucose control, although this is not currently advised for all children and young people with type 1 diabetes.

The quality standard is expected to contribute to improvements in the following outcomes:

  • prompt diagnosis of type 1 diabetes

  • control of blood glucose and HbA1c levels

  • diabetes complications (for example, prevention of diabetic ketoacidosis [DKA])

  • quality of life

  • patient, parent and carer satisfaction

  • life expectancy.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable improvements in the 3 dimensions of quality – safety, experience and effectiveness of care – for a particular area of health or care. They are derived from high‑quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following 2 outcome frameworks published by the Department of Health:

Tables 1 and 2 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2016–17

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicators

1a Potential Years of Life Lost (PYLL) from causes considered amenable to healthcare

ii Children and young people

2 Enhancing quality of life for people with long‑term conditions

Improvement area

Reducing time spent in hospital by people with long‑term conditions

2.3 ii Unplanned hospitalisation for asthma, diabetes and epilepsy in under 19s

4 Ensuring that people have a positive experience of care

Overarching indicators

Improving children and young people's experience of healthcare

4.8 Children and young people's experience of inpatient services

Alignment with Public Health Outcomes Framework

* Indicator is shared

** Indicator is complementary

Indicators in italics in development

Table 2 Public health outcomes framework for England, 2016–19

Domain

Objectives and indicators

2 Health improvement

Objective

People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities

Indicator

2.11 Diet

4 Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, whilst reducing the gap between communities

Indicator

4.12 Preventable sight loss

Safety and people's experience of care

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to diabetes in children and young people.

Coordinated services

The quality standard for diabetes in children and young people specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole diabetes care pathway. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to children and young people with diabetes.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high‑quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high‑quality service for children and young people with diabetes are listed in related quality standards.

Training and competencies

The quality standard should be read in the context of national and local guidelines on training and competencies. All healthcare professionals involved in assessing, caring for and treating children and young people with diabetes should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development sources on specific types of training for the topic that exceed standard professional training are considered during quality statement development.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting children and young people with diabetes. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.