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Type 1 diabetes mellitus in children and young people

Type 1 diabetes mellitus in children and young people

Key learning points:

  • Given the increasing prevalence of type 1 diabetes in children and young people, it is important to maintain an up-to-date register, in line with the quality and outcomes framework, of those diagnosed with the condition in your area
  • Know the signs and symptoms to ensure rapid referral for diagnosis, treatment and effective long-term management
  • Understand long-term management as stipulated in NICE guidance so you can engage with the patient and their family to reinforce the work undertaken in secondary care

An estimated 415 million people worldwide have diabetes and the figure is projected to reach 642 million by 2040. Of the two main types (type 1 and type 2), type 2 diabetes comprises 90 to 95% of cases worldwide, while type 1 diabetes is one of the most common conditions in childhood. Risk factors for type 1 are not clear, but have been linked to infections and other environmental risk factors. Europe has the highest number of under-14s with type 1 diabetes (approximately 140,000) with roughly 21,600 new cases reported between 2014 and 2015.
Alongside Germany and the Russian Federation, the UK contributes the highest numbers to this total (27,600 up to the age of 24 years) and has one of the highest incidence rates per year (12.1 per 100,000 aged four years old and under and 31.1 per 100,000 aged 10 to 14 years), and also one of the worst rates of glycaemic control in Europe.1-3 Poor glycaemic control is associated with later microvascular problems (retinopathy, neuropathy, nephropathy) and macrovascular problems (cardio- and peripheral vascular disease, cerebrovascular disease), as demonstrated in the landmark Diabetes Control and Complications Trial (DCCT) and its follow-up studies.4,5,6

Signs and symptoms
Type 1 diabetes is a condition in which the amount of glucose in the blood is abnormally high because of an absolute or relative lack of insulin. The majority of children and young people who develop diabetes have type 1, alongside much smaller sub-groups with, for example, neonatal diabetes, type 2 diabetes, cystic fibrosis-related diabetes and other syndrome-related types.7 In type 1 diabetes there is a severe lack of insulin due to the destruction of the insulin-producing b-cells in the islets of Langerhans in the pancreas.  
Daily substitution of insulin through injection or a pump is essential for the person’s survival. This type of diabetes usually appears before the age of 30 and has an acute onset, producing signs and symptoms of hyperglycaemia, which can rapidly develop into diabetic ketoacidosis (DKA) if left untreated. This can develop over 24 hours but might be faster in young children.  DKA is also a risk during illness, during a growth spurt or puberty, or when insulin is omitted. This means that while diabetes in CYP is clinically managed in secondary care, primary care teams must be aware of signs and symptoms to ensure rapid referral for diagnosis, treatment and effective long-term management.

Treatment adherence
Before considering adherence in children and young people, it is important to set the context. Changes in diabetes care can be traced back to the St Vincent Declaration in 1989, which set international targets for the prevention of diabetes complications and aimed to improve care.9 The declaration was used to guide the development of the UK’s diabetes national service framework (NSF), which outlined 12 explicit standards for diabetes care10 and policies for execution.11 Following on from these came the development of evidence-based guidelines through NICE and the Scottish Intercollegiate Guidelines Network (SIGN).
However, despite these advances, children and young people in the UK continue to have one of the worst rates of glycaemic control and of DKA in Europe. This has been demonstrated in successive national paediatric diabetes audits for England and Wales for those up to 25 years old.3 The audits demonstrate improving but still disturbing figures. Of particular note is the wide variability in outcomes across paediatric diabetes units reflecting inequalities of care, the disparity of outcomes among different social groups and ethnicities, and the deterioration in control in the years following diagnosis. A summary of key findings and recommendations for 2014-15 can be found in table 1.

Best practice tariff
Inequity of service provision was addressed by the UK Government in 2012 by the introduction of a best practice tariff.12 This provides a conditional annual payment to secondary care providers to improve paediatric diabetes management by standardising patient care. The tariff, which all members of the primary care team need to be aware of, includes the following:

  • A specialist team of paediatric healthcare professionals consisting of: doctor, nurse and dietitian as a minimum, with specific training in paediatric diabetes.
  • All new diagnoses to be discussed with a team member within 24 hours and seen by a senior team member on the next working day.
  • Structured education programmes at diagnosis with
  • updates as needed.
  • At least four clinic appointments per year plus at least eight additional contacts per year (phone calls, emails, school visits).
  • A minimum of four HbA1c checks per year with results available at clinic appointments.
  • An appointment with the dietitian at least once per year.
  • Annual screening as recommended by NICE to include blood tests, blood pressure, weight, and screening for eye, foot and kidney problems from age 12.
  • Psychological assessment at least once a year and access to psychology services as needed.
  • Round-the-clock access to specialist advice on diabetes management for the family and other health professionals.
  • Teams to submit data for the national paediatric diabetes audits and actively participate in local paediatric diabetes network meetings.
  • Teams to have clear policies for HbA1c, patients who fail to attend and transition to adult services.

Supporting the best practice tariff are a range of ongoing developments.
Establishment of a national children and young people’s diabetes network in 2010 (, which supports 10 regional networks in England and one in Wales. It aims to address the lack of a standardised approach to care. Its website contains a wealth of information, including guidelines, educational resources, journal papers and national and regional news for health professionals, patients and families.
Updated NICE guidelines (2015),13 which emphasise glycaemic control to help prevent acute and chronic complications. This is particularly important for CYP as evidence has shown a lower prevalence of complications years later given the continuous risk gradient at any HbA1c level >42 mmol/mol.14 In the UK, the Oxford Regional Prospective Study of children and young people with diabetes showed that for every 1% rise in HbA1c, the risk of microalbuminuria increased by approximately 10%.15 Of particular note here is that young patients who achieve adequate HbA1c levels within three months of diagnosis are much more likely to maintain good levels long term.16 However, diabetes self-care requires a complex daily regime with no lapses, including blood glucose monitoring, exercise, insulin injections or pump settings, carbohydrate counting and dose titration. In addition, intensive glycaemic control is associated with an increased tendency to hypoglycaemia, which can be risky and distressing for patients and carers. Given this, it is no surprise that adolescence is a time when glycaemic control tends to deteriorate with hormonal changes and psychosocial factors that impinge on the need for independence, autonomy and peer support.17 Achieving control requires clear, consistent messages from everyone involved and regular contact to motivate and monitor progress. This recognises the need for integrated work with primary care teams tracking HbA1c levels, reinforcing individual targets and offering family support.18   
    Family support is, of course, crucial for children and young peoplewith type 1 diabetes. Positive parental support has been shown to improve adolescent concordance with treatment by influencing self-efficacy (the ‘I can do it’ feeling) and self-confidence which in turn, affects feelings of autonomy.19 This is important as patients transition to adult care, commonly between the ages of 16 to 19, where self-care impacts upon their prognosis. Involvement of patients and their families in care is therefore critical to achieving good outcomes. The fact that they live with diabetes on a 24-hour basis means they must become experts. This requires specialist education and training, which primary care nurses need to be aware of. The best practice tariff specifies tailored education based on personal need in alignment with age-related reasoning and cognitive abilities. Much research has been conducted on diabetes education in this group20 and evidence suggests that a mix of technology-enhanced learning and face-to-face instruction is the best approach.21 Use of online learning and social networking are growing in popularity, alongside classic one-to-one and group interventions, and also peer support. For parents, it is effective to use brief interventions targeted at health risk behaviours as appropriate to patients’ developmental and psychosocial concerns.22 For adolescents, motivational interviewing techniques have been shown to be effective.23 
    Evidence suggests that young people do not receive a good transition from child to adult services, including in primary care. The service has therefore been redesigned. It stresses the need for a structured, user-orientated service led by a dedicated multi-professional team aimed at both young people and their carers, and which addresses service inequalities. It specifies outcomes for transition focusing on person-led consultations taking into account the increasing maturity of young people and the need for co-creation of care plans.24 Mental health is highlighted as type 1 diabetes may impact on identity development and psychological wellbeing, and increase the risk of depression and eating disorders.19 
    Management of type 1 diabetes is moving at an accelerating rate with the development of new technologies. Daily injections will be superseded by insulin pumps. Finger-stick blood testing will become continuous glucose monitoring with a sensor that measures glucose in the interstitial fluid and guides patients to adjust their insulin dose and lifestyle management. The optimal solution is not far off – a closed-loop system or ‘artificial pancreas’ that links continuous glucose monitering to an insulin pump controlled by algorithms on smartphones (

The national paediatric diabetes audits demonstrate inequalities of care, and the deterioration in control following diagnosis. To tackle this, the best practice tariff aims to promote standardised care, with integrated teamworking between primary and secondary care providers. The primary care nurse needs to work in partnership with families and secondary care teams should ensure that these children reach their full potential. If a nurse has concerns about a child’s diabetes management at home they should act on this by contacting the GP, paediatric diabetes professionals, or others such as the school nurse, health visitor or social worker.

Diabetes UK – Information and support for your patients.
National Children and Young People’s Diabetes network –
Families With Diabetes National Network –   
National Diabetes Paediatric Audit Reports –
Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE guidelines [NG18] Published date: August

1. International Diabetes Federation. IDF Diabetes Atlas, 7th edn. (accessed 7 February 2016).
2. World Health Organization. Diabetes Fact Sheet N312, 2015.
3. NHS Information Centre for Health and Social Care. National Diabetes Paediatric Audit Reports. (accessed 8 August 2016).
4. The Diabetes Control and Complications Trial Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. The Diabetes Control and Complications Trial Research Group. The New England Journal of Medicine 1993; 329:977-86
5. Diabetes Control and Complications Trial Research Group (1994) Effect of intensive diabetes treatment on the development and progression of long term complications in adolescents with insulin-dependent diabetes mellitus. The Journal of Pediatrics 1994;125:177–188.
6. Epidemiology of Diabetes Interventions and Complications. Sustained effect of intensive treatment of type 1 diabetes mellitus on development and progression of diabetic nephropathy: the Epidemiology of Diabetes Interventions and Complications (EDIC) study. JAMA 2003;290:2159-67.
7. Holt RI, Cockram C, Flyybjerg A, Goldstein BJ. Textbook of Diabetes: A Clinical Approach. Willey Blackwell, 2016.
8. Guideline Advisory Group. Clinical guidelines. (accessed 8 August 2016).
9. Diabetes Care and Research in Europe: the St. Vincent Declaration. (1990). Diabetic Medicine 1990;7:360.
10. Department of Health. National Service Framework for Diabetes: standards. The Stationery Office, 2001.
11. Department of Health. National Service Framework for Diabetes: delivery strategy. The Stationery Office, 2003.
12. Department of Health. Payment by Results Guidance for 2013-14. (accessed 22 August 2016).
13. NICE. Diabetes (type 1 and type 2) in children and young people: diagnosis and management, NG18. (accessed 8 August 2016).
14. Fullerton B, Jeitler K, Seitz M, Horvath K, Berghold A, Siebenhofer A. Intensive glucose control versus conventional glucose control for type 1 diabetes mellitus. Cochrane Database Systematic Reviews 2014;2:CD009122.
15. Amin R, Turner C, van Aken S et al. The relationship between microalbuminuria and glomerular filtration rate in young type 1 diabetic subjects: The Oxford Regional Prospective Study. Kidney International 2005;68:1740-9.
16. Watts W, Lamabadusuriya H, Edge JA. Targeting glycaemic control in children and young people with type 1 diabetes: Getting it right from day one. Diabetes Care for Children & Young People 2014;3(3):89-95.
17. Spencer J, Cooper H, Milton B. Qualitative studies of type 1 diabetes in adolescence: a systematic literature review. Pediatric Diabetes 2010;11(5):364-375.
18. King B, Smart C, Lopez P. The role of teamwork in achieving good patient outcomes for children with type 1 diabetes. Diabetes Care for Children & Young People 2013;2:8-12.
19. Spencer J, Cooper H, Milton B. The lived experiences of young people (13–16 years) with Type 1 diabetes mellitus and their parents – a qualitative phenomenological study. Diabetic Medicine 2013; 30(1):e17–e24.
20. Waldron S. Education and other interventions for diabetes management in children and young people: Detailed overview of randomised controlled trials. Diabetes Care for Children and Young People 2012;1(2):73-74.
21. Cooper H, Spencer J, Lancaster J, Titman A, Johnson M, Lwin R, Wheeler S. Development and psychometric testing of the online Adolescent Diabetes Needs Assessment Tool (ADNAT). JAN 2014;70(2):454–468.
22. Parents in Pediatric Health Care Settings:  A Review.  Arch Pediatr Archives of Pediatrics and Adolescent Medicine 2005;159(12):1173-1180.
23. Erickson SJ, Gerstle M, Feldstein SW. Brief interventions and motivational interviewing with children, adolescents, and their parents in pediatyric health care settings. A REVIEW. Archives of Pediatrics and Adolescent MedicineMed. 2005; 159(12): 1173-1180.
24. Diabetes transition and young adult service specification and guidance document Version number: 1, 2016. Quality Strategy Team, Medical Directorate, NHS England.

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