NICE guidance on the care of children and young people with type 1 diabetes

In July 2004 the National Institute for Clinical Excellence (NICE) published its guideline for the diagnosis and management of type 1 diabetes in children, young people and adults (NICE, 2004a). It follows on from the National Service Framework (NSF) for diabetes (Department of Health [DoH], 2001; 2003) and is part of a series of technology appraisals and guidelines that NICE have produced for diabetes care (Table 1).

The guideline is in two parts. One is aimed at the care of children (age <11 years) and young people (age 11–17 years) and the other at adults, but they are linked through the recommendations for transitional care (summarised in Figure 1). The children and young people’s section should be used in conjunction with the NSF for children (DoH, 2004). Several versions of the guideline are available, including full guidance, quick reference guide, and information for the public (Table 2).

This article gives an overview of the development of the paediatric guideline and its contents. We were members of the guideline development group for this section of the guideline, and were therefore closely involved in its development.

The children’s guideline
The children and young people’s guideline focuses on the care, management and ongoing needs of this patient group and their families. The full children’s guideline document is split into eight chapters, which cover the key areas:

• General guideline aims 
• Recommendations for practice 
• Diagnosis and initial management 
• Ongoing management 
• Complications and associated conditions 
• Psychology and social issues 
• Continuity of care 
• Auditable standards.

Grading scheme
NICE guidance is based on current research evidence for the particular subject area. However, during the process of drawing up the paediatric guideline, it was very apparent that there was insufficient robust research into paediatric diabetes. The data contained in the majority of diabetes research, not just from the UK, but also from the rest of the world, were adult based. As a result, a separate grading scheme was used for the children and young person’s guideline. Some of the recommendations have a good practice point (GPP) grading based on the shared views and/or knowledge and experiences of the guideline development group.

Exclusions to the remit of the guidance document included contraception advice for young people with type 1 diabetes, the management of pregnancy for this group and for those who develop diabetes during pregnancy. These groups were excluded because NICE is planning to develop another guideline on aspects of pregnancy and diabetes in the not too distant future.

Another group not covered by this or any other guideline are young people with type 2 diabetes. However, it was made clear that when NICE reviews its guideline on type 2 diabetes it will include a chapter on the care and management of young people who develop type 2 diabetes, as this group was excluded from the original guidance on type 2 diabetes.

Development of the guideline
Although nurses have not always been invited to be members of the NICE guideline development group for previous guidelines, they were fully involved in both the adult and paediatric groups for this one.

Children and young people themselves were included too, by way of a consultation day to look at service provision from their unique point of view. It was also good to see that children and young people with diabetes were seen as a separate group, with different issues and needs, and not as mini adults.

As well as being research based as far as possible, the guidelines had to be written within the scope of NICE guidelines. Thus, for example, NICE does not allow the guideline to be so specific as to state exactly who should be on a team, such as a paediatric nurse – only that the care should be given by a multidisciplinary paediatric diabetes care team with the range of skills required to meet the needs of this challenging patient group and their families and carers. Hopefully this will be enough to encourage areas that do not presently have paediatric diabetes nurses to consider the need for them with greater importance than has sometimes been the case in the past.

Although none of the recommendations are new, they do reinforce previous guidance documents, with suggestions for auditing to assess whether these recommendations are being implemented.

Key recommendations
The following key recommendations (from the quick reference guide) are identified as priorities for implementation. They should be interpreted, where necessary, with reference to the full guideline.

Management from diagnosis
Children and young people with type 1 diabetes should be offered an ongoing integrated package of care by a multi- disciplinary 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.

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 their diabetes care team for advice) is safe and as effective as inpatient initial management.

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 should support informed decision-making.

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 HbA_1c level of less than 7.5% without frequent disabling hypoglycaemia, and that their care package should be designed to attempt to achieve this.

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 (BSPED). This guidance is given in the form of an algorithm in the quick reference guide (Figure 2).

Psychosocial support
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.

Screening for complications and associated conditions
Children and young people with type 1 diabetes should be offered screening for:

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

The future
One interesting recommendation highlights the association between type 1 diabetes and coeliac disease. However, this research has mostly been undertaken with children, not adults (which was a refreshing change). Further research is needed to establish whether adults need to be tested for coeliac disease, but until that time NICE can only recommend that children are tested at diagnosis and every three years until transfer to adult services.

Another really positive aspect of this paediatric guidance is the focus on the team approach to care, where all roles are equally respected and valued. The guideline development group took great care to adopt an inclusive, sharing approach to care in this guideline, rather than the traditional, medical clinician-led approach.

Paediatric diabetes teams cannot be forced to use the NICE guideline, but if they do not they may have to justify why they are not following them.

Being part of the guideline development group was a very positive and enjoyable experience, and we would recommend it to any nurse who is offered such an opportunity. Everyone involved in the development of this guideline in the NICE collaboration centres was willing to listen to each other’s point of view.

It is hoped that this guideline will enable all children and young people with type 1 diabetes in England and Wales to receive the same high standards of care.