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Commentary on the paper by Foreman et al (see page 245)
The conclusions of the paper by Foreman and colleagues1 will not come as a surprise to any parent or paediatrician. Children who behave badly stress their parents. The normal methods of discipline work less well in the face of pervasive hyperactivity, impulsivity, and inattention. After some years of failure, combined with feelings of inadequacy, most parents give up and take the line of least resistance. Paediatricians can do the same. Faced with the chaos of a wrecked surgery and conscious of a very full waiting room, the line of least resistance can suddenly become very attractive. Seeing what appears to be a textbook presentation of a lack of parental discipline, it is all too easy to blame the parents and refer the child on quickly to someone who “does behaviour”.
Hyperkinesis is a major risk factor for parenting breakdown, increasing the risk that a child will be excluded from the family by a factor of three. The risk appears to be independent of any other psychosocial difficulties affecting the family. Logically therefore, early detection and treatment might prevent the distress of family breakdown. However, to achieve this laudable aim will not be easy. Hyperkinesis challenges not only our professional tolerance but also the way paediatric services for all community based childhood disorders are currently structured.
“Hyperkinetic disorder”, the World Health Organisation term, is the description of choice in Europe. “ADHD; attention deficit, hyperactivity disorder” is the preferred term in America, Australia, and many other parts of the world. Hyperkinetic disorder has stricter diagnostic criteria and therefore applies to fewer children than ADHD. Nevertheless, the figures are striking. One per cent of school aged children in the UK and 3–4% of school aged children in the USA could be affected.2 Foreman et al point out that it is not clear how, or even whether hyperactive children come to the attention of paediatricians in the UK. Hyperkinesis, the commonest, treatable, neuropsychiatric problem of childhood, still sits on the fringes of mainstream paediatric practice. The public health consequences and resource implications of more effective diagnosis, treatment, and parental and educational support for this population of children remain largely unaddressed.
The National Institute for Clinical Excellence Guidelines (NICE) for England and Wales and the Scottish Intercollegiate Guidelines Network (SIGN) in Scotland recommend that all children should be assessed and managed by a specialist.3,4 Where will the specialists come from to meet the growing demands for assessment and treatment as well as to undertake preventative work? Hyperkinesis is currently the province of the child psychiatrist with an interest (from which many opt out), the community paediatrician with an interest (a diminishing speciality who have taken up the work by default often with little or no mental health training), or (the very occasional) general paediatrician with an interest. Most specialists have very long waiting lists.
Managing hyperkinetic children is neither easy nor quick and does not fit in with a model of healthcare dominated by short waiting times, rapid assessment, intervention, and discharge. The cut-off point between the pathological and a child with a normal but difficult temperament is not clear. Factors in the child’s environment, while not causative, do heavily influence the outcome. A child with high scores on a screening questionnaire and two saints for parents attending a small, structured, private school may not need treatment. A child with lower scores and a single harassed parent attending a chaotic large inner city school may. There is still a stigma in being labelled as “hyperactive” in most schools. Many parents, while acknowledging the value of medication, often feel a deep sense of failure compared with the parents of children with other chronic medical problems.
It is not uncommon for specialists, pressurised by teachers, parents, or social workers into prescribing medication, to then be accused by other professionals or family members of succumbing to the temptation of a “chemical straitjacket” to make up for the other social deficits in the child’s life. There is not yet a general public or professional consensus that the use of medication might stabilise a family and maintain a child at home or in school.
Assessment is a complicated multidisciplinary process. The most recent national protocol in this journal recommended that an initial assessment should have the following minimal components: a parental interview, a parental rating scale, a child interview, a teacher rating scale, and a descriptive teacher report. The assessment should also document the child’s level of academic achievements, and evaluate and record parental attitudes to the child and the child’s social relationships with peers and parents. The assessment should include a comprehensive family history, medical and developmental history, and medication history. In addition to a physical examination and height and weight, the child should have hearing, motor coordination, and blood pressure checked. Psychometric assessment should look at the child’s verbal and non-verbal abilities, and reading achievement. The child should also be assessed for the well recognised co-morbidities of antisocial behaviour disorder, emotional disorder, tic disorder, pervasive developmental (autistic spectrum) disorder, general and specific learning difficulties, language impairment, motor planning problems, and problems with self esteem.5
Such assessments require input from many different professionals. This model is not realistically achievable in most secondary district services. It will never be available for 1% of the school population without a major, and probably unacceptable shift, in paediatric resources, staff, and training. Anecdotal evidence suggests that although many services have tried to follow this protocol, very few are actually succeeding. The most common service deficit outside the tertiary centres is a lack of clinical psychology, which is essential for detailed psychometric testing and for home based, behaviour management. As services are currently configured, these gold standard guidelines are not available for the large numbers of families who need help. Limousines for some or public transport for all is always a stark choice.
NICE sheds more light on the cost to the English and Welsh economies of the better recognition and treatment of hyperkinesis. In 2000, 1% of the school age population represented 69 000 children in England and 4200 in Wales aged 6–16. Of these, approximately 49 000 children were not receiving medication. If all these children had a trial of methylphenidate, at an average dose of 30 mg, the cost of the drug alone, for both responders and non-responders was estimated to be £7 m (£6.6 m in England and £0.4 m in Wales) in the first year. Health, social services, and education would also incur costs for the assessment and follow up of these children. The costs were estimated at about £23 m for initial specialist assessment (£21.8 m England, £1.5 m Wales) and another £14 m for follow up care in the first year. All costs are at 2000 prices.3
The number of children on medication has risen and continues to rise. Figures from the Department of Health show that in 2002 there were approximately 208 000 prescriptions for methylphenidate (Ritalin, Equasym), up from 158 000 in 1999, 127 000 in 1998, and 92 000 in 1997.6
In the UK, the views and support of general practitioners are critical to the success of any service. In some districts, the NICE guidelines with their emphasis on specialist assessment and treatment had a negative impact on the approach of general practitioners to hyperkinesis in their practice populations. Some general practitioners became reluctant to prescribe repeat prescriptions for controlled drugs to children. Others refused completely, forcing families to attend additional clinic appointments, children to take unnecessary days off school, and waiting times for clinics to increase. The recent introduction of atomoxetine (Strattera), a non-controlled, non-stimulant, selective noradrenaline reuptake inhibitor for hyperkinesis may resolve some of these difficulties. However, this is not yet in widespread general use and most UK specialists have only limited experience of the drug. The wide ranging Shipman Inquiry into the use of controlled drugs in the community may also impact on prescribing in the future.7
Hyperkinesis sums up many of the dilemmas that will increasingly face paediatricians. Our current services for children divide their needs artificially. Physical, educational, and emotional problems are seen as distinct entities managed in geographically separate buildings, by separate professionals, and by teams with different philosophies. Stressed and failing parents are passed from appointment to appointment, with family tensions increasing en route. Social services involvement and family breakdown will be the end point for many.
Children with hyperkinesis will not occupy acute hospital beds or figure in waiting list targets. Yet their outcomes are poor. Many will fail or be excluded from school. Others will suffer the social consequences of their impulsive behaviours in secure units or prison. Although the symptoms of hyperkinesis reduce with age, some young adults continue to need medication and supervision. It is currently almost impossible to find suitable adult services prepared to take them on.
More general paediatricians and general practitioners need to become involved in managing these children and supporting their families. More paediatricians need to take an interest in behaviour management. The “Child in Mind” initiative of the Royal College of Paediatrics and Child Health, which aims to teach paediatricians in training child mental health as it relates to paediatrics, is a promising beginning.8 This could eventually result in the development of a new type of paediatrician with a special interest in behaviour management. It is as yet a drop in the ocean compared to the unmet need. It is hoped that when NICE reviews the national guidelines with their emphasis on specialist management, they will be modified to encourage more generic professionals to become involved.
Parents also need someone who “does behaviour”, and when they need help, they need it urgently. Commissioners should ensure that effective services are available, even if this involves difficult decisions for all who care for and about children.
Commentary on the paper by Foreman et al (see page 245)