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Unit 3 – Special care groups: Children and young people with diabetes: A practical guide for primary care

Carole Gelder

Diabetes is not uncommon in childhood, affecting 1 in 450 children, with the majority (96%) having type 1 diabetes The incidence of both type 1 and type 2 diabetes combined is increasing in those under the age of 24, but it is likely that a large UK general practice will see only one newly diagnosed child every 2 years. Treatment of this complicated condition can be challenging for children, their families and healthcare professionals and treatment priorities and strategies will need to adapt as the child grows. This article reviews some of the common clinical issues in managing diabetes in children and young people. Illustrative case examples are presented in Boxes 1 and 2.

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In the most recent National Paediatric Diabetes Audit of England and Wales for 2015/16 (Royal College of Paediatrics and Child Health [RCPCH], 2017), 28 439 children and young people up to the age of 24 years were known to have diabetes and were under the care of a consultant paediatrician (96% with type 1 diabetes, 2.2% with type 2 diabetes and 1% with other types of diabetes or unknown). According to the audit, paediatric diabetes care in England and Wales has improved dramatically but still lags behind some European counterparts; however, the proportion of those with type 1 diabetes who are achieving an HbA1c <58 mmol/mol (7.5%) has increased since the 2014/15 audit (23.5% to 26.6%; RCPCH, 2017). Although this long-awaited improvement is very welcome, variation between and within services persists with particularly poor outcomes noted in deprived areas, non-white ethnicity, adolescents and females (RCPCH, 2017).

Although most diabetes management for children and young people (CYP) occurs in secondary care in specialist units, primary care plays an integral part in the rapid referral of suspected diabetes in CYP, providing day-to-day support for parents, ensuring access to specialist support when needed acutely, and continuing care once an adolescent has transitioned to adulthood and adult services. This article provides an overview of the care and management of CYP with diabetes.

Symptoms and diagnosis
Type 1 diabetes
A large UK general practice will see only one newly diagnosed child every 2 years (Ali et al, 2011). Most CYP with type 1 diabetes will present in primary care with the classic symptoms of polyuria, polydipsia, weight loss and excessive tiredness (NICE, 2015). However, healthcare professionals do not always consider diabetes in childhood, and many parents may suspect diabetes but delay seeking medical help because they do not want to believe this could happen to their child (Lowes et al, 2005). This is problematic, particularly considering the life-threatening consequences of untreated diabetes and diabetic ketoacidosis (DKA). If type 1 diabetes or DKA is suspected in primary care, the CYP should be referred immediately (on the same day) to a multidisciplinary paediatric diabetes team with the competencies needed to confirm diagnosis and to provide immediate care (NICE, 2015). A random blood glucose of >11 mmol/L is indicative of a need for urgent specialist care. Management of suspected DKA in those with type 1 diabetes is covered below.

Parents may have concerns that the young child or infant is fretful, restless or irritable, but questioning will reveal a story of increased or constant milk feeding and heavy, soaking nappies. Older children may present with secondary nocturnal enuresis. DKA will cause Kussmaul breathing, leading to a diagnosis of chest infection, or abdominal pain that may be mistaken for an acute surgical emergency. Urine testing for glucose and ketones is easy in most children as they will be polyuric if they have diabetes. In infants, collecting a sample can be difficult as nappies are very absorbent. Urine bags can be applied to clean dry skin with close observation  by a family member or carer so the sample can be obtained before leakage occurs. Another strategy is to reverse the nappy, but again, close monitoring will be required.

Once in secondary care, the World Health Organization (2006) criteria state a random capillary blood glucose >11.1 mmol/L or a fasting glucose >7 mmol/L confirms diagnosis of type 1 diabetes (Alberti et al, 2004).

Other types of diabetes
A number of other forms of diabetes are increasingly being diagnosed. However, type 1 diabetes should be presumed and a subsequent diagnosis of type 2 diabetes or monogenic diabetes should be made by the specialist paediatric team (NICE, 2015). Table 1 highlights clinical characteristics of type 1, type 2 and monogenic diabetes (Craig et al, 2014). However, it is important that primary care teams do not try to diagnose CYP. Diagnosis of diabetes in this age group is a specialist role and any CYP suspected of diabetes requires immediate specialist assessment. Secondary diabetes related to cystic fibrosis or high-dose steroid replacement is also a well-recognised condition.

Type 2 diabetes
The clinical presentation of CYP with type 2 diabetes can be similar to that of CYP with type 1 diabetes, and cases with ketosis have been described, although this is often mild. Making a confident diagnosis of type 2 over type 1 diabetes can be a challenge even for an experienced paediatrician and should never be attempted in primary care. NICE (2015) guidance recommends type 1 diabetes is assumed unless there are strong indications for type 2, so the only safe approach is same-day review by a multidisciplinary paediatric diabetes team who will initiate insulin therapy. This is likely to be necessary where blood glucose levels are in double figures or significant ketonaemia is present. Once the child is safely on treatment and stabilised, the diagnosis can then be reviewed regularly in the relative safety of the specialist diabetes clinic.

As in type 1 diabetes, the prevalence of type 2 diabetes is higher in females compared to males and the majority of children with type 2 diabetes in the UK are from Black and Asian ethnic origin (RCPCH, 2017) and have a strong family history of type 2 diabetes (Zeitler et al, 2014). The numbers are still relatively small as only 621 cases were identified in England and Wales (RCPCH, 2017), with most CYP with type 2 diabetes living in deprived areas. However, it is thought that there may be more cases that are being treated in primary care rather than a paediatric diabetes unit.

Type 1 diabetes
CYP with type 1 diabetes should be offered level 3 carbohydrate-counting education with insulin adjustments from diagnosis, which is reviewed at regular intervals. Level 3 carbohydrate-counting is for those using multiple daily injections or insulin pump therapy. It involves calculating the insulin to carbohydrate ratio (ICR) and individualising according to age, sex, puberty, duration of diabetes and activity levels (Smart et al, 2014). National recommendations (NICE, 2015) emphasise that families benefit from intensive management and support from diagnosis, so members and carers should also be offered education. Carbohydrate-counting should be complemented by a knowledge of how nutrition affects diabetes. Smart et al (2011) recommend the diet comprises 50–55% carbohydrate, of which sucrose can be up to 10% of total daily energy intake; 30–35% fat, with <10% coming from saturated or trans-fatty acid sources; and 10–15% protein. Salt intake should be <6 g per day. In regard to diabetes, evidence  suggests low glycaemic index foods improve blood glucose, reduce risk of hypoglycaemia and can, over time, reduce cardiovascular risk (NICE, 2015).

Randomised controlled trial evidence on structured education for CYP remains elusive apart from those with an HbA1c >80 mmol/mol (9.5%), who showed a significant reduction of 9 mmol/mol after attending the Kids in Control of Food (KICk-OFF) course (Price et al, 2016). Evaluating the impact of the group dynamic, an interactive developmentally appropriate curriculum, peer support and parental involvement could add value to future studies and facilitate coping with the isolation of a long-term condition (Gelder, 2016). Digital solutions, such as websites (e.g., e-learning and mobile applications, may engage those who find face-to-face encounters too challenging. However, it is important to ensure such programmes are evidence based, reflect age-specific needs and support gradually increasing self-care.

Type 2 diabetes
Core topics for type 2 diabetes management should cover the effects of diet and physical activity and should be delivered “sensitively”. Discussing the benefits of maintaining a healthy weight and managing obesity should be included at each contact, with life goals agreed (NICE, 2015).

Insulin requirement
The NICE (2015) guideline recommends that an HbA1c target of ≤48 mmol/mol (6.5%) is ideal to minimise the risk of long-term complications. As in most areas of paediatrics, doses of medication are initially based on body weight, and, at diagnosis, prescriptions are informed “estimates” of likely need. Most centres are likely to start doses at the lower end of the estimated range to avoid provoking hypoglycaemia soon after diagnosis. Most CYP will be quite insulin resistant for the first 1–3 weeks after diagnosis, owing to the preceding persistent hyperglycaemia and doses may need to be increased quite rapidly in the early stages. The ISPAD 2014 consensus guideline suggests total daily insulin requirement will vary from <0.5 units/kg/day during the partial remission phase and 0.7–1.0 units/kg/day for prepubertal children (Danne et al, 2014).

For those going through puberty, insulin requirement may be as high as 1.2–2.0 units/kg/day during the rapid growth phase – usually mid-to-late puberty (Danne et al, 2014) – due to increased growth hormone secretion, which increases insulin resistance (Rizza et al, 1982). Total daily doses of insulin are also likely to be very high during puberty, as young people also significantly increase their calorie intake to fuel normal growth (a 60-kg boy could need up to 120 units/day). Despite these large doses of insulin, even adolescents who are very engaged with their diabetes management can struggle to achieve tight glycaemic control and it can be a worrying time for families and carers.

Despite the DCCT (Diabetes Control and Complications Trial) taking place over 20 years ago, the findings are still relevant today and highlight the difficulties for adolescents with type 1 diabetes. Although the beneficial effect of improved glycaemic control was evident, adolescents (aged 13–17 years) found it more difficult to achieve lower HbA1c levels than their adult counterparts (64±1.4 mmol/mol [8.06±0.13%] versus 54±0.3 mmol/mol [7.12±0.03%], respectively; P<0.001), yet they had a greater tendency to develop severe hypoglycaemia (85.7 events per 100 person-years versus 56.9 events per 100 person-years in the adult cohort; DCCT Research Group, 1994). More recent studies suggest a rate of 5–20 hypoglycaemic events per 100-person years (Ly et al, 2009), perhaps due to newer insulins and pumps; however, this study recognised that children remain at higher risk than adults for hypoglycaemic impairment and hypoglycaemic events.

Insulin regimen
A large cohort study in Germany spanning 20 years confirmed the recommendation of intensive insulin regimens by either multiple daily injections (MDIs) or insulin pump therapy from diagnosis (Hofer et al, 2014; NICE, 2015). Children under the age of 5 years, who may eat unpredictably with respect to both timing and quantity of food, as well as adolescents, who tend to have less structure to their lives and value spontaneity, are likely to benefit from either MDIs or insulin pumps.

Many outpatient consultations with adolescents will involve negotiations about how to fit diabetes around their lives. Short-term compromise, such as twice-daily mixed insulin or MDIs with extra long-acting insulins to mitigate missed insulin, as well as predetermined, fixed doses of fast-acting insulin with meals, rather than carbohydrate-counted adjusted doses, may be appropriate for dietitians and diabetes specialist nurses to discuss with the adolescents and their families. Fast-acting insulin should be given 15 minutes before food where possible (NICE, 2015), although as ultra-fast insulins become available, injecting immediately before may become possible.

Injection technique and lipohypertrophy
Correct injection technique should be refreshed at least annubally (NICE, 2015). CYP with diabetes generally need the shortest needle length available (currently 4 mm); however, this will need to be assessed for each individual. The importance of using a new needle each time should also be emphasised in order to reduce the risk of lipohypertrophy (LH; Vardar and Kizilci, 2007).

Rotating injections fully within each site before moving to a new site is recommended to reduce the risk of LH (Blanco et al, 2013; Forum for Injection Technique [FIT] UK, 2016). For CYP, LH can impact body image due to actual or perceived disfiguring, and lead to unpredictable and delayed absorption resulting in glycaemic variation (Blanco et al, 2013).

Insulin pump therapy
Insulin pump therapy has been approved by NICE for use in childhood (NICE, 2008). The guideline states that a child under 12 years of age will qualify for continuous subcutaneous insulin infusion (CSII) therapy if an MDI regimen is considered impractical or inappropriate. For CYP over the age of 12 years, they would need to fulfil the adult criteria to be eligible for an insulin pump (NICE, 2008).

Glucose monitoring
A minimum of five blood glucose checks each day with insulin adjustment from diagnosis regardless of insulin regimen is now recommended by NICE (2015). Technologies such as continuous glucose monitoring (CGM) and sensor-augmented pump therapy (SAPT) have been recognised by NICE (2016a) as having potential to transform daily management and long-term outcomes in specific circumstances, such as hypoglycaemic unawareness.

The risk of hypoglycaemia (blood glucose <4 mmol/L) can be a significant barrier to achieving optimal glycaemic control in CYP with type 1 diabetes (Ly et al, 2009), but reassurance that glycaemic control can be achieved without frequent or severe hypoglycaemia is vital. In young children, subtle behavioural changes that are difficult to detect (such as tantrums or quietness) may signal hypoglycaemia. Nocturnal hypoglycaemia and impaired awareness should be discussed at each specialist paediatric consultation, and glucagon training should be offered to parents and carers (NICE, 2015), particularly where there is increased risk.

Of particular importance for older adolescents and primary care staff is to be aware of the regulations concerning diabetes and driving, as many will ask their GP to provide a “medical” reference. The regulations now state that people on insulin must notify the Driver and Vehicle Licensing Agency (DVLA; in England, Scotland and Wales) or the Driver and Vehicle Agency (DVA; in Northern Ireland) if they use insulin. They must also have awareness of hypoglycaemia and must not have had more than one episode of severe hypoglycaemia in the last 12 months (Gov UK, 2016). Signposting to resources such as can be helpful.

Intercurrent illness and sick day rules
As CYP are generally more susceptible to illness, access to a 24-hour emergency advice line to the CYP diabetes team for specialist advice is usual practice. Nevertheless, GPs and practice nurses will see CYP when they are unwell and are ideally placed to provide advice and support in terms of same-day appointments, tailored advice, additional supplies of blood glucose and ketone monitoring strips or even prompt referral to secondary care if indicated (Gelder, 2017). The most important sick day rule is that CYP keep taking their insulin. They should also keep testing blood glucose and ketones, and keep eating and drinking sugar-free fluids.

When the symptoms of DKA are observed in a CYP with known diabetes (nausea or vomiting, abdominal pain, hyperventilation, dehydration, reduced level of consciousness), blood ketones should be measured. A blood glucose reading of >14 mmol/mol with blood ketones >3 mmol/mol is indicative of same-day, emergency paediatric assessment (NICE, 2015). It is important to be aware that DKA can occur in a CYP with diabetes who is taking insulin with normal blood glucose levels.

Diabetes review
Within secondary care, NICE (2015) guidance recommends that every 3 months CYP should have a clinic appointment, where HbA1c, height and weight are measured, and healthy eating, exercise and injection sites discussed. Regular monitoring of dyslipidaemia by measuring total cholesterol, HDL-cholesterol, non-HDL-cholesterol and triglycerides is now recommended for type 2 diabetes, and so too is maintaining privacy when weighing CYP with diabetes. Over the age of 12 years, an “annual review” with screening for microvascular complications, including blood pressure checks, retinal screening, urine screening for microalbuminuria and a blood test for assessment of renal function, is appropriate. At this review, they should also be screened for autoimmune thyroiditis, which occurs in up to 10% of those with type 1 diabetes. Foot and dental health should also be monitored annually, and a refresher on sick day guidance and using glucagon given. Coeliac disease is more prevalent among people with diabetes, and children should be screened at diagnosis and every 3 years or sooner if symptoms develop.

Management of diabetes at school
Children spend almost half of their waking hours in school (Pihoker et al, 2014) and with an increasing emphasis on intensive insulin regimens, schools are being asked to do more for children with diabetes, especially primary school children who are unable to do their own injections and need someone to administer insulin or, at the very least, need adult supervision. The Child and Family Act (The Stationery Office, 2014) states schools have a legal duty to support pupils with long-term conditions, such as diabetes, and have a policy, a care plan and suitable insurance, which is reviewed and audited. Basic and advanced e-learning resources ( have been developed specifically for school staff, but can be useful for anyone coming into occasional contact with CYP.

Adolescence and transition
During adolescence and into young adulthood, it is particularly important to cover worries about weight and body image, sexual health, pre-conception care, smoking and alcohol use at every contact (Viner and Barker, 2005). Imparting the right information and approach (see the end of the article for a selection of resources) at this stage can improve outcomes in the long term and prevent the young person being lost to follow up (Sheehan et al, 2014). Primary care plays a vital role in delivering contraception advice to young people with diabetes, and counselling young women with diabetes that suboptimal control can carry a high risk of congenital malformation and stillbirth is essential (Scott et al, 2017). When planning a pregnancy, review of medication, starting folic acid at 5 mg/day and achieving HbA1c <48 mmol/L (6.5%) should be the aim. If someone discloses they are pregnant, same-day referral to the adult diabetes specialist team is required. In young men, impotence, erectile dysfunction and the impact of sub-optimal HbA1c should be discussed.

Transitioning from childhood, emerging adulthood and ultimately to adulthood should be a gradual process rather than an abrupt transfer of responsibility and self management (Gleeson and Turner, 2012; Care Quality Commission, 2014; NICE, 2016b). Adolescent brain development studies (Blakemore and Choudhury, 2006) suggest transitioning to adulthood continues up to the age of 25 years, and, as a result, calls have been made for NHS England to extend CYP services to an older age.

Sufficient time should be given for young people with diabetes to familiarise themselves with the practicalities of the transition from paediatric to adult services because this improves clinic attendance. Opportunities to develop involvement in person-centred care include attending part of the clinic consultation alone from the age of 12 onwards to build confidence with asking and answering questions and making decisions (NICE, 2016b). The individual’s emotional maturity, physical development and health should all be taken into account when considering the optimum time and process to transition to adult services.

Primary care teams have a vital role in considering a new diagnosis of type 1 diabetes in all sick children and in ensuring same day specialist assessment for those with elevated point of care testing. Collaboration between primary care and specialist CYP’s diabetes teams and ongoing integrative working is essential to optimise care.

An earlier version of this article was written by Krystyna Matyka (Diabetes & Primary Care, 16: 34–43).


Useful resources
Useful resources for children and young people (CYP) with diabetes

Useful resources for healthcare professionals


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