Aims and intended learning outcomes

The aim of this article is to assist nurses to support children and young people with type 1 diabetes management. After reading this article and completing the time out activities you should be able to:

Introduction

Type 1 diabetes is an autoimmune disease caused by continuous destruction of insulin-producing pancreatic beta cells. It is a chronic, irreversible condition requiring the regular administration of insulin to control blood glucose levels (NHS 2021). Type 1 diabetes is the most common form of diabetes in school-age children and it is estimated that 29,000 children and young people in the UK live with the condition (Juvenile Diabetes Research Foundation (JDRF) 2022). To minimise the risk of long-term complications and improve quality of life, it is crucial that every child and young person with type 1 diabetes receives appropriate care and support from diagnosis onwards.

Causes and risk factors

In type 1 diabetes, antibodies attack the insulin-producing islet beta cells in the pancreas. Once a certain number of cells have been destroyed, the lack of insulin leads to a failure of the body to regulate blood glucose levels and exogenous insulin administration is warranted (Toren et al 2021, Diabetes UK 2023).

Risk factors for type 1 diabetes include:

Presentation and diagnosis

The peak incidence of type 1 diabetes is between the ages of four years and six years and between the ages of ten years and 14 years; 45% of children with type 1 diabetes present with the condition before the age of ten years (Shah and Nadeau 2020).

Signs and symptoms of type 1 diabetes in children and young people include (NICE 2022):

If type 1 diabetes is suspected, the child or young person must be immediately referred, that same day, to a multidisciplinary children’s diabetes team for confirmation of the diagnosis and initiation of treatment (NICE 2022). Type 1 diabetes should be confirmed using the World Health Organization (2019) guidance on the diagnosis and classification of diabetes mellitus. It should be assumed that the child or young person has type 1 diabetes unless there are indicators suggesting the presence of type 2 diabetes, monogenic diabetes or mitochondrial diabetes. NICE (2015) recommends that capillary blood glucose should be measured at presentation with the classic symptoms of type 1 diabetes.

Being overweight is increasingly common in children and young people with type 1 diabetes, as well as those with type 2 diabetes. In overweight children and young people, the clinical presentation of type 1 or type 2 diabetes may overlap (Minges et al 2013). In the past, children and young people with type 1 diabetes would present with dramatic weight loss due to cell starvation. Today, if the child or young person is overweight when they contract a virus that triggers type 1 diabetes, the suspicion may be, at first, that they have type 2 diabetes. The distinction between type 1 diabetes and type 2 diabetes is ultimately made through antibody testing. In type 1 diabetes, autoantibodies are markers of beta cell autoimmunity (Minges et al 2013).

NICE (2015) advises not to measure C-peptide levels to distinguish between type 1 and type 2 diabetes. However, measuring C-peptide levels should be considered to distinguish between type 1 diabetes and other diabetes types. Genetic testing to investigate the possibility of monogenic diabetes should be undertaken when presentation or clinical characteristics are atypical and when there is a family history.

Complications and comorbidities

Having type 1 diabetes (or type 2 diabetes) from an early age reduces quality of life and life expectancy due to changes in metabolic parameters affecting glycaemic control and the development of chronic complications (Rawshani et al 2017). Like type 2 diabetes, type 1 diabetes is associated with complications and comorbidities including cardiovascular disease, diabetic retinopathy leading to blindness, end-stage kidney disease and limb amputations. It is often accompanied by the onset of other autoimmune conditions, such as thyroid and/or coeliac disease, Addison’s disease and hypertension (NICE 2022).

Among young people with a similar body mass index, those with type 1 diabetes (or type 2 diabetes) have been shown to have cardiovascular deficiencies that are not present in those who do not have diabetes. These deficiencies include increased ventricular mass, impaired filling of the heart during diastole, reduced cardiopulmonary fitness, decreased blood flow to the limbs and increased kidney filtration (Bjornstad et al 2015, Koren et al 2015, Bacha et al 2016, Cree-Green et al 2019).

NICE (2015) advises that children and young people with type 1 diabetes should receive:

Undiagnosed type 1 diabetes – or omitted insulin administration – can prompt acute and life-threatening complications such as diabetic ketoacidosis and hyperosmolar hyperglycaemic state, which have a distinctly different pathophysiology but fundamentally the same management protocol (Muneer and Akbar 2020).

Treatment and management

The essential treatment for type 1 diabetes is insulin administration. Intensive administration via multiple daily injections or an insulin pump provides basal and meal bolus insulin, thereby improving glycaemic control (Karges et al 2017). However, exogenous insulin does not quite mimic physiologic insulin, despite advances in insulin pump and glucose sensor technologies. Research is therefore under way to produce super-fast insulins that will instantly respond to a rise in plasma glucose levels but stop acting when glucose levels fall too low (De Ridder et al 2019).

The management of type 1 diabetes in childhood – similarly to that of type 2 diabetes – involves achieving the best possible glycaemic and weight control through a healthy diet and regular exercise. However, few studies have shown that there is value in lifestyle modifications in children and young people with diabetes and many, if not most, young patients do not meet blood glucose targets (Wood et al 2013, Hamman et al 2014). A level of glycated haemoglobin (HbA_1c) above 6.5% increases the risk of chronic complications, but with hormonal instability in puberty, HbA_1c targets are often challenging to achieve. Furthermore, strict glycaemic control increases the incidence of hypoglycaemia, but hyperglycaemia triggers microvascular and macrovascular complications of diabetes. In type 1 diabetes, hypoglycaemia is correlated with cellular resistance to insulin and failure of the pancreatic islet beta cells (Chan et al 2017), as well as with weight gain. A steady and balanced glycaemic control is needed to reduce low blood glucose levels and minimise or prevent weight increase.

Blood glucose monitoring is essential in the management of type 1 diabetes. Children and young people as well as their parents and carers need to understand the optimal target ranges for short-term plasma glucose. According to NICE (2015), blood glucose levels should ideally be:

Children and young people and their parents and carers should be supported to develop a practical understanding of an optimal diet for diabetes management that includes low-glycaemic-index foods, fruit and vegetables and healthy types of fats; encouraged to make healthy food choices; and prompted to regularly discuss diet with healthcare professionals (NICE 2015). While children and young people with type 1 diabetes can eat the same as their peers with dose adjustment for normal eating, there may be social and cultural considerations that need to be discussed when giving dietary advice.

For children and young people who experience frequent and unpredictable hypoglycaemia and/or emotional distress while trying to reach blood glucose and HbA_1c targets, real-time continuous glucose monitoring should be considered. Continuous glucose monitoring was licensed for use in children aged four years and over in March 2022 (NICE 2022). Patients and their families and carers will need education and support to use the technology.

Psychosocial issues

There are multiple barriers to effective management and self-management of type 1 diabetes (Wilson 2019), notably in adolescence, when management and self-management may be impaired by hormonal variations and a lack of adherence to treatment or lifestyle modifications. Type 1 diabetes often negatively affects body image, especially in adolescents, who will feel different from their peers. Disordered eating and unhealthy methods of weight control such as insulin omission can become habitual, and lifetime dependence on insulin can be experienced as reducing self-worth and the sense of belonging. Anxiety and depression can contribute to behavioural issues such as rebellion against, and problems with, glycaemic control (Wilson 2022a).

The management of type 1 diabetes in children and young people places a considerable burden on parents and carers, potentially causing high levels of anxiety and stress (Moghadam et al 2022). However, the involvement of parents and carers is important for (Copeland et al 2013):

Parents and carers supporting adolescents with type 1 diabetes will also be responsible for managing:

Role of nurses and self-management

Beyond detecting diabetes and enabling prompt diagnosis and initiation of treatment, nurses provide essential support to patients and their families and carers in managing type 1 diabetes and navigating its challenges. The chronic complications of the condition contribute to excess morbidity and mortality, but education on effective self-management can prevent or delay their onset. Patients need a self-management strategy to live a long and healthy life. The children’s diabetes specialist nurse has a crucial role in engaging patients, families and carers in self-management and in encouraging them to take ownership of the condition.

Glucose and HbA_1c targets can be challenging for a young person with type 1 diabetes to meet and the role of nurses may include agreeing on a compromise with the patient. If efforts to control blood glucose levels lead to increased hypoglycaemia and/or distress, more achievable targets need to be agreed. The role of nurses includes explaining to young people and their families and carers the benefits of keeping HbA_1c within acceptable limits without increasing hypoglycaemic episodes, and how to reduce and treat hypoglycaemia.

Enhancing type 1 diabetes self-management involves other parties, including school nurses and social care teams. Currie et al (2013) suggested that adherence to an effective self-management routine can be determined by contacting the patient’s GP to determine how often prescription requests are made. However, if the patient and their family feel that they are not believed and that they are being ‘checked up on’, this can lead to suboptimal relationships with healthcare professionals and non-adherence (Wilson 2022a).

Supportive relationships with healthcare professionals and carers have been described as the most beneficial elements in assisting young people to self-manage their condition. In a study by Ayala et al (2014), parents of children with type 1 diabetes described a partnership with healthcare professionals as crucial and reported that the partnership was enhanced when healthcare professionals were able to:

The Royal College of Nursing (2022) has laid out the roles and responsibilities of healthcare professionals in diabetes management. In England and Wales, TREND-UK (Training, Research and Education for Nurses in Diabetes), Diabetes UK, WAND (Welsh Academy for Nursing in Diabetes) and representatives of diabetes specialist nurses and higher education institutions have developed a competency framework that incorporates diabetes-specific nursing outcomes in a clear pathway for career development (Royal College of Nursing 2022).

Type 1 diabetes care in schools

Optimal management of type 1 diabetes is needed in schools (Department of Health 2007, Royal College of Nursing 2013, NICE 2022). Type 1 diabetes is a ‘hidden disability’, meaning that the condition must be known to the school to ensure the child’s needs are met. Children should be able to participate safely in all school activities, undertake glucose testing, eat appropriately and administer insulin – or be supported to do so – as necessary. School staff need to understand the care requirements of children with type 1 diabetes and support them to self-manage their condition. Children aged between four years and 11 years may require the assistance of a designated adult for diabetes care during school hours.

In its guidance on managing medicines in schools and early years settings, the Department for Education and Skills (2005) stated: ‘If a child’s medical needs are inadequately supported this may have a significant impact on a child’s experiences and the way they function in or out of school or a setting’. However, since this guidance was issued little appears to have changed to improve support for type 1 diabetes self-management in schools. Wilson (2019) identified several areas of concern for parents of children with type 1 diabetes regarding diabetes care at school:

It is imperative that schools recognise the needs of children with type 1 diabetes and work in partnership with the children, their parents and carers, and diabetes specialist nurses (Wilson 2022a, 2022b).

Conclusion

There are many challenges to the effective management and self-management of type 1 diabetes in children and young people, including during the school day. Children and young people with type 1 diabetes require optimal diabetes care and support from healthcare professionals and school staff, including education and encouragement to self-manage. Self-management must be integrated into all aspects of patient education. This will support children and young people to maximise their potential, maintain an equal footing with their peers and access educational opportunities and extracurricular activities.