Care of the sick child

Published on 21/03/2015 by admin

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Last modified 22/04/2025

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Care of the sick child

Most sick children are cared for by their parents at home. Medical management is initially given by general practitioners or, in some countries, primary care paediatricians. Most hospital admissions are at secondary care level. A smaller number of children will require tertiary care in a specialist centre, e.g. paediatric intensive care unit, cardiac or oncology unit. Most specialist centres now share care within clinical networks, with the centre linked to a number of surrounding hospitals. For very rare and complex treatments, e.g. organ transplantation and craniofacial surgery, there are a few national centres (Fig. 5.1).

Primary care

The majority of acute illness in children is mild and transient (e.g. upper respiratory tract infection, gastroenteritis) or readily treatable (e.g. urinary tract infection). Although serious conditions are uncommon (Fig. 5.2), they must be identified promptly. The condition of sick children, especially infants, may deteriorate rapidly, and parents require rapid access to a general practitioner or other healthcare professionals working in primary care, who in turn require ready access to secondary care. Advice may also be obtained from a health professional by telephone, e.g. via NHS Direct, via the internet with NHS Direct Online or by NHS Direct cable TV services. Although an individual general practitioner will care for relatively few children with serious chronic illnesses (e.g. cystic fibrosis, diabetes mellitus) or disability (e.g. cerebral palsy), each affected child and family are likely to require considerable input from the whole of the primary care team.

Hospital care

Accident and Emergency

Approximately 3 million children (1 in 4) attend an Accident and Emergency (A&E) department each year in England and Wales. The services which should be provided for children are shown in Box 5.1. The number of departments able to meet these expectations is increasing, often by creating a dedicated children’s A&E department.

Hospital admission

In England and Wales, 1.9 million, i.e. 1 in 6 children is admitted to hospital each year, representing 16% of all hospital admissions. About 60% of acute admissions are under the care of paediatricians, and the remainder are surgical patients (although a paediatrician is also involved in their care while they are in hospital, to oversee any medical requirements) (Fig. 5.3). Most paediatric admissions are of infants and young children under 5 years of age and are emergencies, whereas surgical admissions peak at 5 years of age, one-third of which are elective. The reasons for medical admission are shown in Table 5.1.

Table 5.1

Reason for emergency admission of children <15 years old to hospital

System Specific disorders
Respiratory 25% Respiratory infections 20%
Asthma 3%
Injuries and poisoning 17% Head injury 5%
Poisoning 1%
Gastroenterological 13% Gastroenteritis 5%
Infection 6% Viral infection 5%
Urogenital 3% Urinary tract infection 2%
Neurological 2% Seizures 1%
Endocrine and metabolic 2% Diabetes mellitus 1%
Skin 2%  
Muskuloskeletal 2%  
Other 28%  

image

Data based on 58 061 admissions, 2009–2010. ISD, Scotland.

Although primary and community health services for children have improved markedly over the last decade, the hospital admission rate has continued to rise, although it may now be plateauing (Fig. 5.4). The reasons for this are unclear, but probably include:

Strenuous efforts are made to reduce the rate and length of hospitalisation (Fig. 5.4):

• Speciality of ambulatory paediatrics has been developed; it encompasses specialist paediatricians providing hospital care for immediate medical problems outside inpatient paediatric wards

• Dedicated children’s short stay beds within or alongside the A&E department are increasingly available to allow children to be treated or observed for a number of hours and discharged home directly, avoiding the need for admission to the ward

• Day-case surgery has been instituted for many operations which used to require overnight stay.

• Day units are used for complex investigations and procedures instead of inpatient wards

• Shared care may be provided between hospitals and primary care, with paediatricians and other healthcare professionals seeing children at home or in primary care settings

• Homecare teams aim to provide care in the child’s home and thereby reduce hospital attendance, admission and length of stay. Most teams comprise community paediatric nurses, but some include doctors, and either cover all aspects of paediatric care within a geographical area or are for a specific condition, e.g. cystic fibrosis or malignancy, usually centred around a tertiary referral centre. The problems managed at home by such teams include:

– Changing postoperative wound dressings or managing burns

– Day-to-day management and support for the family for chronic illnesses, e.g. diabetes mellitus, asthma and eczema

– Specialist care, e.g. home oxygen therapy, intravenous infusions via a central venous catheter (e.g. antibiotics or chemotherapy) or peritoneal dialysis

– Symptom and pain control and emotional support of terminally ill children (Fig. 5.5)

 Children’s hospices provide respite or terminal care for children with life-threatening conditions, including malignancy disease, neurodegenerative, metabolic and other disorders.

 Some teams provide a ‘hospital at home’ service for children who are acutely ill, in order to avoid hospitalisation.

Children in hospital

Children should only be admitted to hospital if their care cannot be provided safely at home. Removing young children from their familiar environment to a strange ward is stressful and frightening for the child, parents and family. Ill or injured children may regress in their behaviour, acting younger than their actual age. It also disrupts family routines, not only of the child in hospital but also of siblings who still need to be looked after at home and transported to and from nursery or school.

Family-centred care

Care in hospital should be child- and family-centred. Parents and siblings should be involved in the child’s care, which should be appropriate for the child’s physical and emotional maturity and needs. A holistic approach should be adopted towards the child and his family rather than simply focusing on the medical condition. Young children may interpret the pain experienced in hospital and separation from their home or parents as punishment. In general, the distress arising from separating children from their mothers is greatest in young children, and increases the longer the length of stay and the more frequently the child is admitted. Parents of infants and young children should be encouraged to stay with their child overnight and continue to provide the care and support they would give at home. Parents know best about their child’s usual behaviour and habits and due attention must be paid to their worries or comments. Many parents rapidly learn some of the nursing skills, e.g. tube feeding, required by their child. Good communication is needed between staff and parents to arrive at a mutually agreed plan of responsibilities for looking after the child. This will avoid parents either feeling pressurised to accept responsibilities they are not confident about or feeling brushed aside and undervalued by staff. Parents should be able to stay overnight with their child.

Skilled staff

Children in hospital should be cared for by specially trained medical, nursing and support staff. Every child admitted to hospital should be supervised by a children’s physician or surgeon. Children constitute only a relatively small proportion of the workload in acute surgical specialities, so surgeons and anaesthetists should treat a sufficient number of children to maintain their skills. There should be a ‘named nurse’ responsible for planning and coordinating care by other nurses to ensure that families receive all the information they need and provide a link with staff involved in discharge planning and post-discharge arrangements.

Tertiary care

As the number of children requiring tertiary care is relatively small, it is concentrated in specialist centres. Increasingly, the centre is linked to several district general hospitals to form a clinical network. These centres have the advantage of having a wide range of specialists, not only medical staff but also nursing and other healthcare professionals, and diagnostic and other services. A disadvantage is that they are often some distance from the child’s home and hospital stay may be prolonged, e.g. following a bone marrow transplant. Accommodation for parents should be provided. Shared care arrangements between tertiary centres and local hospitals are designed to minimise the need for the child to travel to the specialist centre, but depend on excellent communication to be effective and valued by the family. For example, a child with leukaemia would attend a tertiary centre for the initial diagnostic assessment and treatment, and subsequently for specialised treatment and periodic review, but much of the maintenance therapy would be provided by the local hospital together with monitoring of their health and regular blood and other tests performed by a specialist nurse at home.

Pain

It is easy to ignore or underestimate pain in children. Pain should ideally be anticipated and prevented.

Management

The approaches to pain management are listed in Box 5.2. This should allow pain to be prevented or kept to a minimum. Age-appropriate explanation should be given when possible and the approach be reassuring; however, it is imperative not to lie to children, otherwise they will lose trust in what they are told in the future. Distraction techniques such as blowing bubbles, telling stories, holding family toys or playing computer games, as well as the involvement of trained play specialists, can be highly successful in ameliorating pain in children. Some children develop particular preferences for a particular venepuncture site or distraction technique, and this should be accommodated as far as possible.

For minor medical procedures, e.g. venepuncture or inserting an intravenous cannula, pain can be alleviated by explanation and the use of a topical anaesthetic. Additional and appropriate use of inhalation agents such as nitrous oxide (laughing gas) or the adjunctive use of mild sedation alongside pain relief, e.g. intranasal midazolam, can be helpful for more painful procedures such as suturing a wound. For more invasive procedures, e.g. bronchoscopy, a general anaesthetic should be given.

Postoperative pain can be markedly reduced by local infiltration of the wound, nerve blocks and postoperative analgesics. For severe pain, there was reluctance in the past to use morphine in children for fear of depressing breathing. This should not occur when morphine is given in appropriate dosage under nursing supervision to children with a normal respiratory drive. Intravenous morphine can be given using a patient-controlled delivery system in older children or a nurse-controlled system in young children.

Prescribing medicines for children

There are marked differences in the absorption, distribution and elimination of drugs between children and adults.

Absorption

In the neonate and infant, oral formulations of drugs are given as liquids. However, their intake cannot be guaranteed and absorption is unpredictable as it is affected by gastric emptying and acidity, gut motility and the effects of milk in the stomach. In acutely ill neonates and infants, drugs are given intravenously to ensure reliable and adequate blood and tissue concentrations. Intramuscular injections should be avoided if at all possible as there is little muscle bulk available for injection, absorption is variable and they are painful. Rectal administration can be used for some drugs; absorption is more reliable, but this route is not popular in the UK. Significant systemic absorption can occur across the skin, particularly in pre-term infants. Occasionally this can be used therapeutically, but is a potential cause of toxicity, e.g. alcohol and iodine absorption from cleansing solutions applied to the skin for procedures.

Young children find it difficult to take tablets and a liquid formulation is required. Most are glucose-free. Persuading children to take medicines is often a problem, especially if the preparation has an unpleasant taste; experience and imagination help to overcome their reluctance. Adherence (compliance) is improved when medicines are only required once or twice a day and if regimens are kept simple.

Distribution

Water comprises a larger percentage of the body in the neonate (80%) than in older children and adults (55%). Drugs which distribute within the extracellular fluid will require a larger dose relative to body weight in infants than in adults. As extracellular fluid correlates with body surface area, this is used when accurate drug dosage is required, e.g. cytotoxic agents. For drugs with a high margin of safety, drug dosages are expressed per kilogram body weight or based on age, with the assumption that the child is of average size. Weight-based dosages should not simply be extrapolated to older children, as the dosage will be excessively large.

In the first few months of life, the plasma protein is low. More of a drug may be unbound and pharmacologically active. In jaundiced babies, bilirubin may compete with some drugs, e.g. sulphonamides, for albumin binding sites, making such drugs unsuitable for use in this situation.

Breaking bad news

Doctors often face the difficult task of imparting bad news to parents and children. In paediatric practice, it may be because there is:

Initial interview

The manner in which the initial interview is conducted is very important. It may have a profound influence on the parents’ ability to cope with the problem and their subsequent relationship with health professionals. Parents often continue to recall and recount, for many years, details of the initial interview when they were informed that their child had a serious problem. Parents of children with life-threatening illnesses have said that what they valued most was open, sympathetic, direct and uninterrupted discussion in private that allowed sufficient time for doctors to repeat and clarify information and for them to ask questions (Box 5.3).

Box 5.3

How parents wish to be told the diagnosis of a life-threatening illness

Adapted from Woolley H, Stein A, Forrest GC et al. 1989. Imparting the diagnosis of life-threatening illness in children. British Medical Journal 298:1623–1626.

Discharge from hospital

Children should be discharged from hospital as soon as clinically and socially appropriate. Although there is increasing pressure to reduce the length of hospital stay to a minimum, this must not allow discharge planning to be neglected. Before discharge from hospital, parents and children should be informed of:

In addition:

• Suitability of home circumstances needs to be assessed, particularly when the home requires adaptation for special needs

• Social support may need to be arranged, especially in relation to child protection

• Medical information should be added to the child’s personal child health record

• Consider which professionals should be informed about the admission and what information it is relevant for them to receive. This must be done before or at the time of discharge. The aim is to provide a seamless service of care, treatment and support, with the family and all the professionals fully informed (Fig. 5.7). This can be facilitated for children with a chronic illness or disability by having a key worker to coordinate their care.

Ethics

Situations arise in paediatric practice in which the course of action that should be followed is unclear. Knowledge of the ethical theories and principles which underpin medical practice is helpful in understanding the issues involved. It is important to justify decisions to investigate or treat in accordance with these principles, and in language that is clear to all concerned.

Definitions of the principles of medical ethics

• Non-maleficence – do no harm (psychological and/or physical)

• Beneficence – positive obligation to do good (these two principles have been part of medical ethics since the Hippocratic Oath)

• Justice – fairness for all, equity and equality of care

• Respect for autonomy – respect for individuals’ rights to make informed and thought-out decisions for themselves in accordance with their capabilities

• Truth-telling and confidentiality – important aspects of autonomy that support trust, essential in the doctor–patient relationship

• Duty – the moral obligation to act irrespective of the consequences in accordance with moral laws which are universal, apply equally to all and which respect persons as autonomous beings

• Utility – the obligation to do the greatest good for the greatest number

• Rights – justifiable moral claims, e.g. the right to life, respect, education, which impose moral obligations upon others.

Application of ethical principles to paediatrics

Consent

Valid consent is required for all medical interventions other than emergencies or when urgent intervention is necessary to prevent serious risk of present or future harm. It provides the ethical and legal authority for action which would otherwise be a common assault or interfere with the right of individuals to decide what should be done to them (autonomous choice). To be valid, consent must be sufficiently informed, and freely given by a person who is competent to do so. Clinicians have a duty to provide sufficient information to enable a reasonable person to make the decision and must answer all questions honestly. Information has to be given in language that is clear and understandable. In UK law, the legal age of consent to medical treatment is 16 years. The right of children below this age to give consent depends on their competence rather than their age. They may consent to medical examination and treatment provided they can demonstrate that they have the maturity and judgement to understand and appraise the nature and implications of the proposed treatment, including the risks and alternative courses of action. This is known as Gillick competence.

When a child lacks the maturity and judgement to give consent, this capacity is given to a person having parental responsibility – usually a natural parent, or to a court. In practice, problems occur only when there is disagreement between the child and the parents and clinicians over treatment, e.g. contraception for under 16-year-olds.

When a girl less than 16 years of age requests contraception without parental knowledge, a professional can provide it if satisfied that she cannot be persuaded to inform her parents, that she is likely to have sex with or without contraception and that receiving contraception is in her best interests. These are known as the Fraser guidelines.

Despite including children’s views in consent, legal judgements have not supported children who refuse treatment parents and clinicians feel to be in their best interests, especially if its purpose is to save life or prevent serious harm, e.g. heart transplantation for acute cardiomyopathy in an intelligent 15-year-old patient. Where disputes cannot be resolved by negotiation or mediation, or there is doubt over the legality of what is proposed, legal advice should be sought. Whatever the outcome, children should have their views heard and be given reasons as to why they are being over-ridden.

Best interests

It is a general ethical and legal maxim that the best interests of the child are paramount. Doctors therefore have a duty to save life, restore health and prevent disease by treatments that confer maximum benefit and minimal harm and which respect the autonomy of the child as far as possible. Parents have the ethical and legal duty to make decisions on behalf of their child, provided that they act in their best interests. Disputes may arise over what constitutes best interests and who should decide about them; they may require legal intervention, especially when the withholding or withdrawing of life-sustaining treatment is involved. Courts have generally been supportive of the position that in some circumstances the burden to the child of providing life-sustaining treatment outweighs its benefits.

Case History

5.1 Meningococcal septicaemia

Jack, aged 5 years, has a fever and purpuric rash and you suspect he may have potentially fatal meningococcal septicaemia. Jack hates needles and makes it clear that he rejects any sort of injection. ‘No I don’t want an injection, go away’ is the message, loud and clear, when you try to take blood, do a lumbar puncture, and insert an indwelling intravenous cannula for his antibiotics. Yet with the full and anxious approval of his parents, you go ahead and do these things anyway. But if Jack was 25 years old and made it clear that he refused your interventions, while you’d strongly urge him to give permission and explain that he was in real danger of dying as a result of such refusal, you would not (presumably) treat him against his will, even if his mother and father still urged you to do so.

In contrast to normal adult medical ethics, in paediatrics the autonomy of the patient either is not present at all (as in babies and young infants) or is often not sufficiently developed to be respected if the child’s decision conflicts with what appropriate other people consider to be in that child’s best interests. The decisions about the child’s medical care are generally entrusted to the parents. Why the parents? They are given the privilege and responsibility of making decisions on behalf of their children largely because they are most likely to protect and promote the interests of their children. The normal assumption in paediatric practice is that doctors should work closely with parents and give advice that parents may or may not accept. Wherever possible, a mutually trusting and respectful working relationship should be developed and maintained, both because it will be in the best interests of the child and because it will tend to lead to far better experiences of medical care for all involved.

Also, consider whether your decision would have been the same about performing an extra venepuncture for a special blood test for an ethically approved research project.

Case Histories 5.1 and 5.2 demonstrate some of the ethical problems encountered in paediatrics.

The ethics of research in paediatrics

Research involving children is important in promoting children’s health and well-being and may provide an evidence base for practice. Children differ from adults in their anatomy, physiology, disease patterns and responses to therapy but many drugs in current use have not been tested on them. However, children are perhaps more vulnerable to the harm which may be produced by research and should be protected against it.

Distinction is often made between therapeutic research, where there is an intention to benefit the individual subject, and non-therapeutic research, which carries a wider societal benefit but without intent to benefit individuals. Research that fails to benefit individuals may be ethical provided that it involves an acceptable level of risk.

Where a child suffers from a particular disease, e.g. acute lymphoblastic leukaemia, randomised clinical trials may be used to compare treatment regimens. The ethical justification for such trials is that there is no good reason to believe that one of the treatments would be better than the other – ‘therapeutic equipoise’ – and that the standard treatment used for comparative purposes is the best currently available.

The situation is different when an investigation, e.g. blood test, X-ray or intervention, is proposed for normal children as part of a control group in a trial or for the purpose of establishing a normal range. Both can be ethically justified provided that the procedure in question carries no more risk than generally encountered and accepted in everyday life.

Whatever the nature of the research a number of criteria must be met:

Case History

5.2 Acute lymphatic leukaemia, truth-telling and stopping treatment

Jane, aged 10 years, has acute lymphoblastic leukaemia which was diagnosed 4 years ago. She has relapsed, with early involvement of the central nervous system. She is well known to the staff of her local children’s ward as she has had four relapses of her leukaemia and a previous bone marrow transplant. It is the opinion of her paediatric consultant that no further medical treatment is likely to be curative. Jane asks one of the junior paediatric doctors why her parents had been so upset following a recent discussion with the consultant, at which she had not been present. The parents had made it very clear to all the staff that they did not want their child to be informed of the poor prognosis, nor would they tell her why she was not having further chemotherapy.

The parents have heard of a new drug which is claimed, in some reports on the internet, to help such children. However, it is very expensive, there is evidence that it does not cross the blood–brain barrier and the doctors consider it highly unlikely to be of benefit. The parents insist on a trial of the drug.

Ethical issues to consider are:

• Autonomy – the parents claim the right to control the information reaching their child on the grounds that it is in her best interests as judged by them.

• Truth-telling – the staff feel that it would be wrong to reassure her falsely.

• Non-maleficence – the parents wish to avoid the shock of the news and the loss of hope in their daughter.

• Beneficence – the staff wish to support the child effectively, which would be difficult if she were to be isolated by ignorance of what is upsetting her family and carers.

• Justice – should scarce resources be used on this new drug? Because her parents are desperate, should Jane be given a drug which, in the specialist’s opinion, will not benefit her?

• Best interests – what are Jane’s best interests and who should decide them? What weight should be given to Jane’s own views based on her experience of her illness?

In such situations, further discussion between the parents and staff whom they trust is usually the key to resolving the situation. The parents will need to understand the mutual benefits of adopting as open a pattern of communication as possible. They may be helped by a member of staff being present or helping them talk or listen to the child, who will usually understand more than the parents suspect.

Parents almost always wish to do the best for their child. Detailed explanation is likely to help them see that the child’s best interests may not be to seek further cure but to accept a change of focus towards palliative care. A second opinion from an independent specialist may be helpful, as may a specific ethical review. If, despite all efforts to reach agreement, the parents reject the doctor’s advice, it is fairest to let a court of law decide whether or not to accept the parents’ demands.

Evidence-based paediatrics

Clinicians have always sought to make decisions in the best interests of their patients. However, such decisions have often been made intuitively, given as clinical opinion, which is difficult to generalise, scrutinise or challenge. Evidence-based practice provides a systematic approach to enable clinicians to efficiently use the best available evidence, usually from research, to help them solve their clinical problems. The difference between this approach and old-style clinical practice is that clinicians need to know how to turn their clinical problems into questions that can be answered by the research literature, to search the literature efficiently, and to analyse the evidence, using epidemiological and biostatistical rules (Figs 5.8, 5.9). Sometimes, the best available evidence will be a high-quality systematic review of randomised controlled trials, which are directly applicable to a particular patient. For other questions, lack of more valid studies may mean that one has to base one’s decision on previous experience with a small number of similar patients. The important factor is that, for any decision, clinicians know the strength of the evidence, and therefore the degree of uncertainty. As this approach requires clinicians to be explicit about the evidence they use, others involved in the decisions (patients, parents, managers and other clinicians) can debate and judge the evidence for themselves.

Why practise evidence-based paediatrics?

There are many examples from the past where, through lack of evidence, clinicians have harmed children, e.g.

• Blindness from retinopathy of prematurity. In the 1950s, following anecdotal reports, many neonatal units started nursing all premature infants in additional ambient oxygen, irrespective of need. This reduced mortality, but as no properly conducted trials were performed of this new therapy, it took several years for it to be realised that it was also responsible for many thousands of babies becoming blind from retinopathy of prematurity.

• Advice that babies should sleep lying on their front (prone), which increases the risk of sudden infant death syndrome (SIDS). Medical advice given during the 1970s and 1980s, to put babies to sleep prone, appears to have been based on physiological studies in preterm babies, which showed better oxygenation when nursed prone. Furthermore, autopsies on some infants who died of SIDS showed milk in the trachea, which was assumed to have been aspirated and this was thought to be more likely if they were lying on their back. However, an accumulation of more valid evidence from cohort and case–control studies showed that placing term infants prone was associated with an increased risk of SIDS.

Evidence-based medicine allows clinicians to be explicit about the probability (or risk) of important outcomes. For example, in discussing with parents the prognosis of a child who has had a febrile seizure, one can state that ‘the risk of developing epilepsy is 1 in 100’, instead of using vague terms, such as ‘he/she is unlikely to develop epilepsy’.

Explicit analysis of evidence has also become more important with the increasing delivery of healthcare by teams rather than individuals. Each team member needs to understand the rationale for decisions and the probability of different outcomes in order to make their own clinical decisions and to provide consistent information to patients and parents.

To what extent is paediatric practice based on sound evidence?

There are two paediatric specialities in which there is a considerable body of reliable, high-quality evidence underpinning clinical practice, namely paediatric oncology and, to a lesser extent, neonatology. Management protocols of virtually all children with cancer are part of multicentre trials designed to identify which treatment gives the best possible results. The trials are national or, increasingly, international, and include short- and long-term follow-up. Examples of the range of evidence available in paediatrics are given in Box 5.4. In general, the evidence base for paediatrics is poorer than in adult medicine. Reasons for this include:

Box 5.4   Examples of the range of evidence available in paediatrics

1 Clear evidence of benefit

Surfactant therapy in pre-term infants

The meta-analysis (see Fig. 10.12) from a Cochrane systematic review shows that mortality is reduced by 40% in preterm infants with respiratory distress syndrome (RDS) treated with surfactant compared with placebo.

This evidence was rapidly produced and introduced into practice as:

3 No clear evidence

Bulk-forming laxatives for constipation

Bulk-forming laxatives, such as methylcellulose or ispaghula husk, are used in children with constipation. However, this is not based on clear evidence. There are no systematic reviews and no randomised controlled studies of these agents in children.

Some possible reasons for the lack of evidence on the use of these laxatives in this common condition are:

• The relatively small number of children with significant illness requiring investigation and treatment. To overcome this, multicentre trials are required, which are more difficult to organise and expensive.

• Additional ethical limitations

• There is limited investment by the pharmaceutical industry in drug trials, as drug use in children is insufficient to justify the cost and ethical difficulties of conducting trials. As a result, approximately 50% of drug treatments in children are unlicensed (‘off label’).

The consequence is that there is less of a culture of randomised controlled trials in paediatrics compared with adult medicine.

For evidence-based practice to become more widespread, clinicians must recognise the need to ask questions, particularly about procedures or interventions which are common practice. However, evidence-based medicine is not cookbook medicine. Incontrovertible evidence is rare, and clinical decisions complex, which is why clinical care is provided by clinicians and not technicians. Evidence-based healthcare cannot change this, but is an essential tool to help clinicians make rational, informed decisions together with their patients. In addition, evidence-based paediatrics provides a way for clinicians to articulate their priorities for research and thereby set a research agenda which is relevant to service needs.