Key points

A supportive family is an important aspect of diabetes management.
Family stress and marital disharmony affect the child’s metabolic control.
Clinicians dealing with children with diabetes must spend time assessing the family structure and help the family to support their child.
Management strategies must be applicable to the age and developmental stage of the individual.
Most children have Type 1 diabetes and insulin should never be withheld in these children.
There is an increasing incidence of Type 2 diabetes in children and complications are often evident at diagnosis or occur soon after.
Management strategies are different for children with Type 1 and Type 2 diabetes.

Rationale

Diabetes management in children and adolescents changes during the various transitions that occur as the child grows and develops. Diabetes and its management impacts on the family dynamics and can affect quality of life and mental well being. Family support is essential if the child is to achieve euglycaemia and psychological well being. Thus, the family needs to be included in education and management decisions. Management plans need to make provision for normal growth and development and a gradual transition to independent self-care.

Introduction

The number of children diagnosed with Type 1 diabetes is increasing globally and Type 2 diabetes in children is an emerging global problem. The incidence varies but ∼70 000 children <14 years are diagnosed annually and an estimated 440 000 children have diabetes worldwide (DIAMOND 1999; EURODIAB 2000; Soltesz 2006). Lee (2008) reported a 38% increase in the number of hospital admissions with diabetes aged 0–29 years between 1993 and 2004. The hospitalisation rate was higher in girls, 42% versus 29% for males.

In most countries girls and boys are equally affected but the rate is not the same among age groups. It tends to increase with age, peaking around puberty, usually slightly earlier in girls, which is consistent with the earlier onset of puberty. The global incidence is estimated to increase by ∼50% in the next 15 years (Soltesz 2007). In Australia ∼1 in 500 children <15 years have Type 1 diabetes.

A number of forms of diabetes occur in childhood but Type 1 is the most common especially in children <10 years:

Type 1, which accounts for ∼98% of diabetes in children.
Type 2, which has an increasing prevalence.
Other specific types:
- Monogenic defects of beta cell function, for example, familial diabetes, neonatal diabetes. Neonatal diabetes presents in the first 6 months of life (Srinivasan & Donaghue 2007). About 50% have transient neonatal diabetes and insulin treatment is usually not required with ∼3 months, but may recur in the second or third decade.
- Diabetes as a consequence of diseases of the exocrine pancreas, for example, cystic fibrosis.
- Diabetes associated with endocrine diseases such as Cushing’s syndrome.
- Medicine-induced diabetes, for example, chemotherapy, glucocorticoids.
- Diabetes associated with genetic syndromes such as Trisomy and Turner’s syndrome.

The reasons for the increased incidence of Type 1 diabetes in children are relatively unclear. Various explanations have been proposed; for example, genetic factors such as the ‘thrifty gene’ (Need 1962), the ‘thrifty phenotype’ (Hales & Barker 1992) theories. More recently, the focus has been on environmental changes that could overload the beta cells, which gave rise to the ‘overload hypothesis’ and the ‘spring harvest hypothesis’ in which genetically predisposed children have an accelerated growth rate and increased body fat. Likewise, puberty occurs at a younger age. Various environmental triggers such as the decline in breast feeding, age at which solids are introduced, exposure to foreign antigens early in life that impair the immune system, the ‘hygiene hypothesis’, have been implicated.

Diabetes is often misdiagnosed or the diagnosis is delayed in developing regions and under-resourced communities in developed countries, where the symptoms might be attributed to malnutrition or starvation because people do not know the signs and symptoms (Kaufman & Riley 2007). As a consequence, morbidity and mortality rates are high and is compounded by lack of equipment and essential medications. The International Diabetes Federation (IDF) insulin for life programme has had a significant impact on the lives of many children in underprivileged areas.

Type 2 diabetes, once rare in children, is increasing (IDF Consultative Section on Diabetes Education 2002; Sinha et al. 2002). Up to 45% of newly diagnosed diabetes in children and adolescents is Type 2 (Shaw 2007). Emerging epidemiological data indicate Type 2 diabetes mainly occurs in overweight children from specific ethnic groups particularly African Americans, Hispanics, Asians, Native Americans, Indigenous Australians, and Middle Eastern people (Shaw 2007). The increasing prevalence in Asian countries is linked to the increase in western lifestyles with high fat diets and reduced exercise (Gill 2006).

A recent study points to a link between increasing obesity and high consumption of fructose (American Journal Public Health 2007). Fructose appears to affect fat degradation in the liver by inhibiting PPAR-alpha receptor activity, which is lower in humans than rats, and the leptin signalling system, which accelerates fat oxygenation in the liver and reduces fat synthesis (Hepatology 2007). Insulin resistance and impaired glucose tolerance and other features of the metabolic syndrome are present in 25% of obese children, which puts them at high risk of Type 2 diabetes (Sinha et al. 2002).

In addition, high rates of television viewing, an indicator of inactivity, are associated with increased risk of developing diabetes and higher HbA_1c (Margeirsdottir et al. 2007). Other possible causes include low birth weight (Wei et al. 2003) and low birth weight associated with ‘catch up growth’ (Bhargava et al. 2004), see Chapter 4 and Chapter 14. These findings led to the theory of the developmental origins of health and disease (DOHaD) (Yajnik 2007).

Although the onset of Type 2 diabetes may be less dramatic than Type 1, Type 2 diabetes in children is associated with significant risk of dyslipidaemia, hypertension, and polycystic ovarian syndrome, asthma, and obstructive sleep apnoea (Tait et al.2008). Cardiovascular disease develops at an early age and is often present at diagnosis (Pinhas-Hamiel 2007) and progression to complications is faster than in children with Type 1 diabetes. Significantly, children and adolescents with Type 2 diabetes may be at higher risk of microvascular disease especially nephropathy than those with Type 1 (Shaw 2007).

Thus, early identification through comprehensive screening programmes and effective management of Type 2 diabetes in children is imperative to reduce the burden of the disease and the projects health care costs (Weiss & Caprio 2005; Zimmett et al.2007). The IDF recently introduced diagnostic criteria for the metabolic syndrome in children, which is described in Chapter 1.

Managing children and adolescents with diabetes

The health care needs of children and adolescents change as they grow and develop regardless of diabetes type. Some aspects of care are common to both Type 1 and Type 2 but there are inherent differences in managing Type 1 and Type 2. Multidisciplinary team care involving a paediatric endocrinologist, diabetes educator, dietitian, psychologist, and other experts as indicated is essential to achieving optimal outcomes.

A number of management guidelines and position statements are in current use and should be referred to for specific detailed information. These include:

Care of children and adolescents with Type 1 diabetes (American Diabetes Association (ADA) 2005).
Standards of medical care in diabetes: special considerations for children and adolescents (ADA 2004).
Australian Paediatric Endocrine Group (APEG).
Position statements such as age-specific recommendations for screening for nephropathy (ADA 2004), retinopathy (ADA 2004), school and day care (ADA 2004), and camps (ADA 2004).
Consensus guidelines for the management of Type 1 diabetes mellitus (ISPAD 2000).
Type 2 diabetes in children and adolescents (ADA 2000).

Aspects of care that apply to both Type 1 and Type 2 diabetes in children and adolescents

Where possible, education and stabilisation at diagnosis should occur in an ambulatory setting. However, hospitalisation is necessary in ∼30% of newly diagnosed Type 1 children (ADA 2005). If hospitalisation is necessary, for example, in the case of ketoacidosis, the time spent in the hospital should be kept to a minimum. The overall aims of management are to provide an individualised education and management plan to achieve:

An accurate diagnosis.
Prevent or delay the onset of diabetes-related complications including short-term complications such as hypoglycaemia and ketoacidosis. Long-term complications are rare before puberty but complication screening typically begins around the age of 10.
A balanced nutritious diet suitable for the growth and development stage of the child.
Acceptance of the diabetes by the child and the family.
Assist the child to gradually take over the self-care tasks.
Develop an holistic, integrated health plan that includes sexual health, responsible contraception and planned pregnancy as suitable to the age and development stage of the young person.
Admission to acute care should the need arise.
Smooth transfer to adult care.

The child should be involved in developing their diabetes management plan within their capabilities. Disagreements between the family and the child about who is responsible for management and poor adherence are predictors of high HbA_lc (Anderson et al.1991). The child’s involvement in their self-care gradually increases as they mature and their fine motor and problem-solving and coping skill develop.

Differentiating between Type 1 and Type 2 diabetes at diagnosis is not always straightforward due to the increasing prevalence of obesity, ketonuria, and diabetic ketoacidosis (DKA) (Svoren & Wolfsdorf 2006). About one third of adolescents with Type 2 diabetes are ketotic and 25% of newly diagnosed people present with DKA. If the diabetes type is not clear it may be advisable to measure islet cell autoantibodies and C-peptide. Table 1.2 in Chapter 1 depicts the main differences between Type 1 and Type 2 diabetes.

Regular assessment of general health and diabetes status and how the family is managing is essential because there are major physical, psychological, emotional, spiritual, and social differences among the growth and development stages. Assessing maturity, sensitive supervision and allowing the child to gradually take over specific diabetes selfcare tasks according to their capability should be factored into an holistic diabetes plan. The family needs to be involved in developing the care plan and monitoring progress.

Educating teachers and other carers is also important and the child should be involved in these activities if appropriate. Diabetes should not preclude the child from attending school excursions and camps but extra precautions will need to be taken, for example, being able to eat on time. Diabetes camps provide an important learning experience and many children who attended camps when they were young help out on diabetic camps as they grow older. This kind of peer support contributes to psychological well being (ADA 2004).

Preventive care includes regular blood glucose monitoring, complication screening, immunisation according to immunisation schedules and influenza vaccinations during at-risk periods when the child is >6 months.

Managing Type 1 diabetes

Type 1 usually presents with a sudden onset of symptoms and insulin injections are needed for survival. A well balanced diet and adequate appropriate exercise are also essential. Insulin and dietary requirements can change rapidly, especially in children, due to rapid changes in activity levels and growth. Therefore, consistent acceptable blood glucose levels may be difficult to achieve.

ADA (2005) suggests the following insulin doses. The number of doses per day depends on a number of factors; increasingly basal bolus regimens are used for older children and adolescents:

Newly diagnosed Type 1: initial dose ∼0.5–1.0 units/kg/day. Lower doses may be required before puberty. Higher doses may be needed after puberty and in DKA. Infants and toddlers require very small doses. Insulin pens that can deliver 0.5 unit doses are available and should be used where possible. If these pens are not available the insulin may need to be diluted to achieve accurate 1 unit dose increments. Specific diluents are required for specific insulins and can be obtained from the relevant manufacturer. Great care and appropriate parental education is required for accurate dilutions.
Newly diagnosed Type 1 is often followed by a honeymoon period once the acute metabolic disturbance is reversed. Endogenous insulin production increases for varying periods up to ∼12 months. Insulin doses usually need to be reduced to prevent hypoglycaemia. Insulin requirements increase as the honeymoon phase ends and at the onset of puberty.
During puberty 1.5 units/kg/day are often needed.

Screening for associated autoimmune diseases such as coeliac disease (Chapter 10), and thyroid disease may be required.

A supportive and encouraging family is important if the child is to accept diabetes and eventually take over diabetic self-management. The family in turn needs support, advice and encouragement. Good control is associated with a structured supportive family (Johnson et al. 1990; Thompson et al. 2001). Families need to provide appropriate supervision and discipline and maintain a family structure that meets the needs of the child and other family members.

Hypoglycaemia can be unpredictable in children whose activity level and intake and consequently insulin needs can vary enormously from day-to-day and within the day. Insulin need also change with exercise and pubertal hormone changes. Hypoglycaemia can be difficult to deal with in young children and can manifest as:

Unaccustomed naughtiness
Noisy behaviour
Aggression
Crying
Tremulousness

If it is not recognised and treated promptly the child can become unconscious, which is frightening for the child and those around them (see Chapter 6). Parents often feel safer if they have glucagon available and some also like it to be available at school if the teacher or school nurse is appropriately educated. Nocturnal hypoglycaemia can be particularly difficult to manage. There may not be any significant long-term effects associated with nocturnal hypoglycaemia but it can affect mood the following day. The child maybe irritable on waking and might impair recognition of daytime hypoglycaemia (Dunger & Hovorka 2007). If hypoglycaemia is severe and frequent diet, exercise, and medication regimen need to be revised and other contributing factors excluded. The parents may learn to use glucagon, see Chapter 6. Table 13.1 depicts the major management strategies according to developmental stage.

During adolescence the hormonal surge at puberty can make blood glucose control difficult. Dietary restrictions and the diabetic regimen can be seen as obstacles to fitting in with peer activities and may be neglected. Achieving independence from the family can be difficult if diabetes is diagnosed at this time.

Social pressure and the emphasis on food that is part of the diabetes management regimen can increase the likelihood of eating disorders. Young people with diabetes fear putting on weight and skip meals and run their blood glucose levels high to avoid weight gain (Dunning 1994). Eating disorders are widespread among adolescent girls and diabetic-specific concerns may contribute to their development. The full range of subclinical and clinical eating disorders may be more prevalent in women with diabetes (Levine & Marcus 1997; Colton 2007). Eating disorders in Type 1 diabetes often arises in adolescence and often persists into adulthood (Colton 2007). Colton distinguished between disturbed eating and eating disorders and found girls with an eating disorder had higher HbA_lc and BMI but that the HbA_lc was not necessarily higher in the presence of disturbed eating. Health professionals need to be sensitive to social pressures and body image issues and the possibility that an eating disturbance might be present. Screening for disturbed eating is essential and referral for specific counselling might be indicated to avoid long-term nutritional problems and other associated risks such as depression. Children with Type 2 diabetes may be at particular risk given the focus on weight loss.

The menarche affects control in girls and thereafter the blood glucose profile often reflects the stages of the menstrual cycle (see Chapter 11). When the child becomes an adolescent contraceptive and pregnancy counselling are vital. Metabolic control often deteriorates partly due to the increase in growth hormone and reduced insulin sensitivity at puberty. Psychosocial issues such as privacy, body image, and independence also have an impact. Negative feedback about the adolescent’s metabolic control and ‘nagging’ about the risk of long-term complications is unlikely to be effective and may actually result in non-attendance.

Table 13.1 Self-management expectations according to age and stage. (a) Metabolic targets need to be appropriate to the age and stage and revised regularly as the child grows and develops; and (b) recommended HbA_1c targets.

	Key milestones	Management considerations
(a) Developmental stage
Babies <1 year	The parents are responsible for care Significant hypoglycaemia risk due to undeveloped catecholamine response	Family stress Unrecognised hypoglycaemia, coma, seizures Nocturnal hypoglycaemia
1–3 years	The parents are responsible for care Food refusal is common and increases the risk of hypoglycaemia Hypoglycaemia may manifest as temper tantrums	Consistent ‘rules’ and discipline are important Blood glucose testing is needed to distinguish normal toddler’s behaviour from hypoglycaemia
3–7 years	Fine motor skills are developing and while the parents retain responsibility for providing care they should involve the child in their care	Involve the child in self-management
8–11 years	Children are capable of undertaking many diabetes self-management tasks but still require parental guidance and support They may enjoy diabetes camps and teaching their class about diabetes but care must be taken to ensure these activities do not negatively impact on their ‘difference’ from non-diabetic children	Diagnosis at this age often results in mild depression and depression increases with longer duration of diabetes but is different for girls and boys Depression may be precipitated when the ‘honeymoon phase’ ends.
Adolescence	Physical, cognitive, and emotional development occurs rapidly Puberty can affect metabolic control Diabetes self-care can inhibit independence Most adolescents should be responsible for their self-care but parental support and guidance are still needed	Poor metabolic control and non-adherence may indicate psychological problems or family conflict Parental support still needed but needs to be tactful
(b) HbA_1c targets
Age range	HbA_1c targets	Blood glucose target range^a
Children <6 years	7.5–8.5%	<6 months, 5–15 mmol/L
6–12 years	<8%	<6 years, 7–12 mmol/L (bedtime)
Adolescents	<7.5%	>12 years, 4–8 mmol/L, 7–10 mmol/L (bedtime)

^a Australian Clinical Practice Guidelines (2005).

Polycystic Ovarian Disease (PCOS) is associated with insulin resistance and diabetes and often first manifests at menarche. The effects of unpredictable, heavy menstrual bleeding are disabling and place the young woman at risk of iron deficiency anaemia, and tiredness (Legro & Dunaif 1997). Chronic anovulation increases the risk of endometrial hyperplasia and endometrial cancer. Infertility is a consequence and has a negative impact on the young person’s self-concept. Early diagnosis and management is important. PCOS often manifests as excess facial hair and irregular periods, see Chapter 14.

Generally, paediatric depression is serious, common, and persistent. It is the second leading contributor to the global disease burden between ages 15 and 44 and recurs in 70% of affected individuals (World Health Organisation (WHO)). It is more common in boys before puberty and in girls after puberty. Mood disorders are associated with high morbidity, concomitant diseases, and risk-taking behaviour such as excess alcohol consumption, smoking, and illegal drug use. Children with diabetes are at particular risk and higher rates of depression have been reported in young people with diabetes than the general population (Blanz 1993) thus regular mental health assessment is essential. Bryden et al. (2002) reported poor clinical outcomes in approximately one third of young people with diabetes, which highlights the need to identify problems early.

Children from single parent families and families with marital conflict are at increased risk of poor metabolic control (Thompson et al. 2001). Family dysfunction, inadequate treatment adherence and unacceptable glycaemic control often go hand-in-hand (Lorenz & Wysocki 1991). Unacceptable glycaemic control carries the risk of admissions to hospital with ketoacidosis and the development of long-term diabetic complications (see Chapter 10). Non-adherence is multifactorial and may be a sign of rebellion or forgetfulness. Aggressive antisocial conduct is more likely to result in poor metabolic control whereas emotional problems tend to lead to better glycaemic control (Bryden 2001).

Discrepancies between home blood glucose tests and HbA_1c might indicate underlying stress and coping problems. It represents an opportunity to explore factors operating in the young person’s life, their feelings about diabetes and the management regimen and their coping mechanisms (Conrad et al. 206). This needs to be undertaken very tactfully using techniques suitable to the child. For example, inviting young children to write a story, poem, or draw a picture about their life with diabetes for the next visit, which can act as the basis for meaningful discussion and/or indicate whether referral for specialist counselling is needed.

An emerging issue that has both positive benefits and negative consequences for young people is their disclosure of personal information on the Internet. Internet support groups can enable young people to anonymously discuss diabetes with peers, access information, and reduce feelings of isolation. However, an analysis of information entered on MySpace revealed that most entries by 16 and 17 year olds included personally identifiable information, information about personal risk-taking behaviours such as sexual activity and drug and alcohol use, and often included a photograph/s (Moreno et al. 2007). Moreno et al. did not mention diabetes status but there is no reason to suspect the results would be different.

The transfer from paediatric care to adult specialist care can be very stressful. Neglecting the diabetes self-care, not attending appointments and poor metabolic control is common at this time (Court 1991). Tact and understanding are very important if these young people are not to be lost to adequate medical supervision (Court 1991; Dunning 1993).

Managing childhood Type 2 diabetes

The management goals and many of the issues discussed for children with Type 1 diabetes apply to children with Type 2 but the medication regimen and nutrition requirements are different. A comprehensive complication assessment should be undertaken at diagnosis and then as indicated, but at least annually.

Schwenk (2007) showed an intensive weight management programme consisting of intensive nutrition information, and a structured education programme led to improvements in blood pressure, HDL, and LDL cholesterol, weight loss, and lower BMI compared to controls. However, Schwenk noted the programme was intensive and time consuming. Cost–benefit analysis was not reported.

Medications are often needed to control fasting and postprandial blood glucose and blood lipids if they are not controlled using lifestyle interventions. Weight loss and exercise are central to management but symptoms, weight loss, and persistent hyperglycaemia indicates medications are needed. Insulin (∼2 units/kg) may be required initially (Svoren & Wolfsdorf 2006).

The only glucose lowering medicines approved for use in Type 2 diabetes in children are insulin and metformin. The recommended starting dose of metformin for children 10–16 years is 500 mg/day, which can be increased to 500 mg DB with further weekly 500 mg increments to a maximum daily dose of 2000 mg provided there are no contraindications to its use or associated adverse events (Svoren & Wolfsdorf 2006). Alternatively, 500 mg metformin XR can be administered with the evening meal to reduce the gastrointestinal side effects. Bedtime basal insulin such as glargine can be commenced at bedtime if blood glucose is not controlled using metformin.

Medication self-management

Managing medicines is an important aspect of self-care that must gradually be assumed by the child. The transition to assuming responsibility for managing diabetes medicines is a key aspect of most diabetes education programmes. However, adolescents are likely to use a range of other medicines, thus medication management should include age appropriate information about other medicines including over-the-counter and complementary medicines (CAM) as well as diabetes medicines.

Self-initiated over-the-counter medicines use begins early in adolescence: by ∼16 years the majority of adolescents have self-prescribed medicines such as analgesics and antipyretics, girls self-prescribe more frequently than boys (Buck 2007). However, adolescent’s knowledge about these medicines is often inadequate and, significantly, parental education did not influence medication knowledge.

Medicine education programmes for adults are usually appropriate for children >11 years. A number of medicines education programmes have been developed for younger children (Curry et al. 2006; Gardiner & Dvorkin 2006; Federal Drug Administration (FDA) undated). Table 13.2 suggests important information to facilitate the transition to medication self-management.

Table 13.2 Important medicine-related information children need. Information should be provided using recognised education strategies and quality use of medicines. Quality use of medicines is discussed in Chapter 5.

(1) Children have a right to information about their medicines appropriate to their age, diabetes type, and developmental levels. The information should encompass over-the- counter and can medicines as well as conventional medicines be personalised.

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