Young people with chronic disease and disability are frequently the most experienced consumers of the health system in the paediatric environment. Clinicians are encouraged to acknowledge and respect the experience and views of these young people and their families.

Conflict of priorities

It is not uncommon for a conflict of priorities to occur between the therapeutic goals of the clinician (focused on disease control and management) and the developmental goals that are frequently the main concern of young people. For example, a young person with persistent asthma who goes on a school camp may be too embarrassed to take their preventer medication while on camp, preferring instead to put up with the unknown consequences (and the unspoken wishful thinking that their asthma will be fine). Negotiating management approaches with the young person is the key to achieving medical goals in ways that the young person is developmentally comfortable with. Providing the young person with a choice of acceptable management options is one useful strategy.

Adherence

Promoting adherence with treatment regimens is a challenge for clinicians, irrespective of the age of the patient. It can be especially difficult with adolescents with chronic disease, as they are generally far less influenced by long-term health goals than adults are. There may be conflict between the young person’s (developmentally appropriate) pursuit of increasing autonomy and independence, and the clinician and parents’ desire to improve their health. Practical tips include:

• Provide a clear rationale for all treatments.
  
• Simplify the treatment regimen.
  
• Focus on developing treatment routines.
  
• Discuss the acceptability of treatment in relationship to peers and education.
  
• Use simple language and write down all instructions.
  
• Don’t use threats.
  
• Work with both parents and young people. Parents may need to be more involved, or encouraged to ‘back off’ and not be overprotective.

Promoting self-management

As young people with chronic disease mature, they gradually take on increasing responsibility for managing their health. It is important that both clinicians and parents have developmentally appropriate expectations of self-management. It is challenging for both clinicians and parents to educate and empower young people to manage as much of their chronic condition as possible.

Examples of specific elements of self-management include the adolescent being able to:

• Name and explain their condition.
  
• Explain why each medication is necessary.
  
• Remember to take their medication.
  
• Arrange repeat prescriptions before medication runs out.
  
• Be able to consult with doctors (see the doctor alone, ask and answer questions, arrange and cancel appointments).
  
• Develop a desire to be independent with health care.
  
• Prioritise their health over (some) other desires.

Multidisciplinary teams and mixed messages

The value of the multidisciplinary team is well established. However, there is the potential for individual health professionals within the team to give conflicting messages to young people and their families. Excellent communication within the team is crucial to ensure that a mutually agreed set of messages is delivered to the young person and their family.

Working across the sectors

The emotional health and well-being of young people is influenced by many factors, including families, peers and schools. It is valuable to gain information from these other sources, provided young people and their parents consent to the sharing of health information by the clinician with other agencies. Sources may include:

• School and other educational agencies.
  
• Welfare agencies.
  
• Recreational programmes.
  
• Peer support groups.

Transition to adult health care

Transition is the purposeful and planned movement of adolescents with chronic diseases and disability from child-centred to adult-oriented healthcare systems. The term ‘transfer’ refers to the physical move from one healthcare setting to another. In contrast, ‘transition’ refers to the process of facilitating developmentally appropriate self-management and generally requires the acquisition of knowledge, attitudes and skills over time. This skill set starts to develop well before transfer to adult health care and continues after any physical move. From the time of diagnosis, anticipation of transfer to an adult setting is one way of ensuring that the physical move is truly part of a broader transition process. Seeing young people alone for at least part of the health consultation from the age of 14–15 years will actively promote self-management skills and facilitate successful transition to adult health care.

A planned and coordinated transfer to adult health care is essential. Community providers, such as GPs, are an important source of continuity of care. When adult tertiary care is indicated, identifying an adult specialist and team that is both interested and capable of providing tertiary care is fundamental. A detailed medical and allied health summary should be compiled and clearly communicated to adult providers.

Adolescents with intellectual or complex disability

The health assessment of adolescents with intellectual and/or complex medical disabilities requires the same diligence and respect as afforded to all patients. The aetiology and treatment of acute distress can be difficult to interpret in adolescents with intellectual or complex disabilities; see chapter 14, Developmental delay and disability, p. 170.

Young people with intellectual disability have variable potential for independent living and self-management. Capability is assessed over the course of childhood and adolescence and it is important to listen to reports from parents, teachers and other community workers who know the patient well. In the long term, GPs often play a central role in the provision of adult medical care for these patients; however, those with complex medical issues often benefit from transfer to specialised clinics.

High-risk young people

High-risk young people include those with significant health risk behaviours (e.g. regular drug use) or mental health problems. A small proportion of young people are considered to be at very high health risk. This includes adolescents who are socially disadvantaged by homelessness, those engaged in multiple health risk behaviours, those with major mental health problems or those within the juvenile justice setting. These young people commonly do not receive appropriate health care. Close consultation and liaison with existing case-managers in the community is a priority and can be more effective than referral to new services. Case managers may be based within a range of community-based facilities, such as general practice, youth mental health services, or protective services. Youth-focused services are preferred to adult specialist services. Young people whose families are chaotic or whose parents have a mental disorder are especially vulnerable.

Adolescent medicine units

Young people who require admission to hospital prefer to be nursed with other people their own age. Adolescent inpatient wards provide developmentally appropriate nursing, recreation and peer support. Specialist adolescent medicine units are increasingly available in Australia. Common reasons for referral include:

• Complex health problems which are relatively unique to the adolescent age group, including eating disorders, deliberate self-harm and suicide attempts, school problems and behaviour disorders.
  
• Problems occurring at the interface between adolescent general health and adolescent mental health, such as early depression, psychosomatic disorders and chronic fatigue syndrome.
  
• Complex interactions between young people, disease and disease treatments, including poor adherence.
  
• Concerns about physical growth, puberty and sexual behaviours.
  
• Complex problems requiring access to community networks and programmes dealing with young people.

The notion that adolescence is a time of inevitable emotional turmoil, with few implications for future mental health, has given way to a view that the teens and early twenties are critical years for the development of major psychiatric disorders that persist into adulthood (see also chapter 16, Child psychiatry). Major disorders with high rates of first onset in young people include:

• Depression and self-harm.
  
• Anxiety disorders.
  
• Obsessional neurosis.
  
• Schizophrenia and drug-induced psychoses.
  
• Bipolar affective disorders.
  
• Substance misuse.
  
• Personality disorders.
  
• Anorexia and bulimia nervosa.

The recognition and early diagnosis of adolescent mental health disorders is a clinical challenge. Presenting features may be less well developed than in an adult population. The mounting evidence that psychological and social treatments are most effective at this early stage of illness underlines the necessity for early diagnosis and referral for treatment.

Adolescent mental health problems commonly arise in the context of interpersonal and social problems. There is an increasing understanding that puberty marks the transition to a phase where new mental disorders commonly begin. During assessment and treatment, consideration should be given to recent stresses arising from grief (e.g. death or illness in the family or among friends), conflict (e.g. victimisation by peers or arguments with parents), relationship breakdowns and problems with school work. Many young people have longer-standing problems with parents, school and a lack of emotional and interpersonal skills to deal with the developmental tasks of adolescence (e.g. difficulties in initiating social contact, dealing with new sexual feelings and negotiating greater independence within the family). It is useful to assess aspects of lifestyle that contribute to good mental health (e.g. regular exercise, sleeping and eating patterns) rather than poor mental health (e.g. substance misuse).

Depression, deliberate self-harm and suicide

After motor vehicle accidents, suicide is the next most common cause of death in 15–25 year olds in Australia. Factors most commonly associated with completed suicide are a history of deliberate self-harm, major depression, substance abuse and antisocial behaviour (see also chapter 16, Child psychiatry).

Physical restraint and emergency sedation should be used only when other reasonable methods of calming the patient down are unsuccessful. A patient who is acting out and does not need acute medical or psychiatric care should be discharged from hospital rather than restrained. Alternative means of calming the patient include prevention of a crisis by anticipating and identifying irritable behaviour (consider the patient’s past history), early involvement of mental health services, provision of a safe ‘containing’ environment, listening and talking, and possibly a plan of collaborative sedation (e.g. patient agreeing to oral medication).

When restraint is required, a coordinated team approach is essential, with roles clearly defined and swift action taken. Unless contraindicated, sedation should usually accompany physical restraint.

Emergency restraint should be considered in any patient who requires urgent medical or psychiatric care, who has aggressive and combative behaviour which is:

• Compromising the provision of urgent medical treatment (physical or psychiatric).
  
• Placing the patient at risk of self-harm.
  
• Placing staff at risk.

Contra-indications to physical restraint and emergency sedation include:

• Safe containment possible via alternative means.
  
• Inadequate personnel/setting/equipment.
  
• Situation judged as too dangerous, e.g. patient has a weapon (call police if there is concern about the safety of staff or others).
  
• Known adverse reaction to drugs usually used (e.g. neuroleptic, malignant or other acute brain syndromes related to trauma or infection).

Procedure

1 Establish roles, including defining person in charge (usually attending doctor).

2 Assemble team. Person in charge to assemble team of seven people.

3 Draw up drugs. Drugs of preference are midazolam 5 mg, and haloperidol 5 mg (draw up together). Ensure benztropine available.

4 Secure the patient quickly and calmly. At least five people are required – one for the head, and one for each limb (assign roles before approaching the patient). The patient should be prone, with hands and feet held flexed behind back.

5 Administer midazolam 5 mg (onset rapid) and haloperidol 5 mg (onset 15– 20 min) by intramuscular injection into lateral thigh. Beware the risk of needle-stick injury. Further titrated doses of 0.1 mg/kg may be required (preferably i.v.).

6 Sedated patients must have continuous oxygen saturation monitoring. They must have a nurse present continuously, with close observation of conscious state, respiration, heart rate, blood pressure and temperature.

7 Explain the procedure to the parents/carers if possible.

8 After restraint the patient must have a complete medical and mental health assessment to guide subsequent management. In some cases certification and transfer to an in-patient mental health facility may be required (Section 9 of the Mental Health Act 1986). Consider the need for ongoing physical restraint and/or for ongoing sedation.

9 Document fully in the patient’s unit record.

Complications of emergency sedation include anaphylactic reactions, respiratory depression, hypotension, tachycardia and extrapyramidal reactions. Dystonia may occur with major tranquillisers, particularly as the benzodiazepine is wearing off – treat with benztropine (0.02 mg/kg i.v. or i.m.) or repeated small doses of diazepam.

Anorexia nervosa and bulimia nervosa typically arise in the early to mid-teens. The most common eating disorders to present clinically are sub-syndromal forms where the mental state is similar but the full picture has not developed. Such disorders may pass spontaneously but should be treated seriously. Where symptoms persist after 3 months, referral for more specific treatment is warranted.

Adolescent dieting is the usual forerunner of an eating disorder. Although most dieters do not go on to develop an eating disorder, preoccupation with dieting that leads to the avoidance of other activities (e.g. not going out with friends because of feeling fat) deserves attention.

Anorexia nervosa

Diagnostic criteria of anorexia nervosa are:

• Refusal to maintain body weight over a minimum normal weight for age and height.
  
• Intense fear of gaining weight or becoming fat, even though underweight.
  
• Distorted body image.
  
• Amenorrhoea.

Severity indices of postpubertal anorexia nervosa include the current weight, rate of weight loss, methods employed (e.g. abstinence, self-induced vomiting, purging, exercise) and any associated depression or other mental health disturbance (e.g. obsessional neuroses). Consideration should be given to the exclusion of other primary psychiatric disorders (e.g. major depression or obsessional neurosis) and physical disorders (thyrotoxicosis and malabsorption). The earlier the onset of the disorder (e.g. peripubertal), the greater the concern for long-term physical complications such as growth retardation and reduced bone mineral density.

Management

• Multidisciplinary outpatient care is the model of care preferred by most specialist centres. They commonly include input from medical, nutritional and mental health professionals.
  
• Hospital admission is indicated in adolescents where there is evidence of physiological compromise (e.g. bradycardia and hypotension), rather than the extent of weight loss per se. Generally, admission is indicated before significant metabolic or physiological complications (e.g. hypokalaemia) are evident. In effect, admission is indicated where outpatient treatments have failed.
  
• Refeeding is the mainstay of most acute admissions. Nasogastric feeding is commonly used in inpatient settings to achieve physiological stability. Refeeding syndrome (with significant metabolic and physiological consequences) can be fatal. It can follow parenteral, NGT and oral refeeding. Close attention must be paid to electrolyte and cardiovascular status, especially in the first 72 h following refeeding (see chapter 6, Nutrition, p. 99).

Bulimia nervosa

Bulimia nervosa is characterised by frequent loss of control of eating (bingeing), self-induced vomiting and fear of fatness. Intercurrent depression and difficulties with impulse control in other areas (e.g. alcohol use, sexual behaviour and deliberate risk-taking) are common. The psychosocial context in which bulimia arises is often similar to that found in depression, but an antecedent history of dieting is usually evident.

Treatment is usually on an outpatient basis, and focal psychotherapies such as cognitive-behavioural therapy (CBT) are effective both in individual and group treatment settings. Antidepressants such as SSRIs are indicated when severe depressive symptoms are evident, as well as to prevent relapse.

Chronic fatigue syndrome (CFS) is characterised by unexplained, prolonged (>3 months) and disabling fatigue associated with constitutional and neuropsychological symptoms. It occurs in children, although is more common in adolescents. Most patients have a history of suspected or confirmed viral illness.

Presenting features can include

• Prolonged fatigue.
  
• Increased need for sleep.
  
• Pain (headaches, myalgias, abdominal pain).
  
• Nausea.
  
• Depressive symptoms.
  
• Loss of concentration, difficulty with balance.

Examination and investigations (FBE, ESR, U&E, creatinine, LFT, TFT and urinalysis) are usually normal. The diagnosis is a clinical one and differential diagnoses that must be considered include connective tissue disease, inflammatory bowel disease, coeliac disease, gastrointestinal infection and depression.

Management

• Must be developed with patient, family and local doctor in a team approach.
  
• Individual management plan that is focused on addressing the psychosocial features and impact of their illness.
  
• Balanced activities and encouragement of social contact and reintegration into normal life.
  
• Symptomatic management of focal symptoms, e.g. sleep difficulties.

Prognosis

• Most recover with normal function, but it often takes several years (2–5).
  
• A small number remain more chronically unwell.