Attention deficit hyperactivity disorder (ADHD) and hyperkinetic disorder (HKD) are relatively common behavioural disorders, with a prevalence of around 5% in children and young people in the UK.1-6 Affected individuals manifest developmentally inappropriate degrees of 'hyperactive', 'impulsive' and 'inattentive' behaviours, defined by the diagnostic criteria shown in Table 1 (below).
|Table 1: Diagnostic and Statistical Manual (DSM) IV criteria for attention deficit/hyperactivity disorder|
Either (1) or (2).
(1) Inattention: At least six of the following symptoms of inattention have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level:
(2) Hyperactivity-impulsivity: At least five of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level:
|B.||Some symptoms that caused impairment were present before age seven|
|C.||Some symptoms that cause impairment are present in two or more settings (e.g. at school, work, and at home)|
|D.||There must be clear evidence of clinically significant impairment in social, academic, or occupational functioning|
|E.||Does not occur exclusively during the course of a pervasive developmental disorder, schizophrenia or other psychotic disorder, and is not better accounted for by mood disorder, anxiety disorder, dissociative disorder, or a personality disorder.|
*DSM-IV and ICD-10 diagnostic criteria are very similar; DSM-IV describes three subtypes (predominantly 'inattentive', predominantly 'hyperactive-impulsive', and a combined type). HKD represents a more severe disturbance with the presence of significant 'hyperactivity' required for diagnosis with no other subtypes recognised.
NB. Further refinement and modification of these criteria is likely to follow within DSM V and ICD-11.
Converging evidence from a number of sources, including neuropsychology, non-invasive brain imaging and genetics, suggests that there is a significant genetic and biological contribution to the aetiology.7
Attention Deficit and Hyperkinetic Disorders in Children and Young People8 is the first guideline produced by SIGN for a child and adolescent psychiatric disorder, and reflects the ongoing discussion and controversy surrounding prevalence and definition, which have often resulted in wide variations in practice.
There has been a lack of consensus about the relative value of medication, psychosocial, educational and other interventions. In particular, the use of psychostimulants remains controversial, with concerns about efficacy, side-effects, and the potential for inappropriate prescription and abuse.
These concerns tend to divert attention from other important aspects of this complex disorder, not least the potential long-term complications and comorbidities.
Children and young people with ADHD/HKD have major difficulties in regulating their day-to-day activities and are often unpopular with both peers and adults, and fail to reach their potential. Many demonstrate comorbid difficulties such as developmental delays, specific and other learning difficulties, and other challenging emotional and behavioural problems (see Table 2, below).
|Table 2: ADHD/HKD: recognised comorbidities and associations6,8-13|
* NB. Observed sleep difficulty is not. however, a diagnostic criterion for ADHD/HKD
Although the observed rate of ADHD diminishes with age, follow-up studies in North America show increased rates of antisocial behaviour and delinquency in adolescence15-19 and significant persistence into adulthood.10,20 This is accompanied by an observed excess of conduct disorder, substance abuse, criminality and antisocial personality disorder compared with controls.10, 17, 21
Early comorbidity with conduct disorder and oppositional defiant disorder yield the most adverse outcomes.9,22-24
Clearly ADHD and HKD represent a very significant risk to long-term development and can be responsible for considerable morbidity and dysfunction for the child or young person, their peer group and family.
Early diagnosis and appropriate management therefore presents a major challenge to professionals including GPs, health visitors, teachers, psychologists, psychiatrists, paediatricians and social workers.
It is hoped that this clinical guideline will provide a framework for early and appropriate evidence-based assessment and management of children and young people who present with signs and symptoms suggestive of ADHD/HKD.
The evidence base
An appropriate and experienced multidisciplinary group was formed, to include representatives from child and adolescent psychiatry, clinical and educational psychology, paediatrics, clinical genetics and epidemiology, general practice, health visiting and teaching.
The SIGN executive assisted in the collection of evidence, utilising a highly structured development methodology.25 The search covered The Cochrane Library, Embase, Medline, and Psychlit databases; these searches were supplemented by manual searches of recent journals, references cited in other guidelines, and references from papers identified through searches and from personal databases.
Critical appraisal of the evidence was undertaken by small groups of the development team working in areas of special interest.
Outcome of literature search
Overall, the literature on ADHD/HKD was distinguished by quantity rather than quality.
Methodological problems in trial design were common, e.g. in relation to categories and numbers of patients and controls recruited, trial duration, allowance for comorbidity, lack of detail regarding appropriate blinding, variable use of standardised assessment techniques to assess outcomes, use of different 'informants', changes in diagnostic criteria over time, and their applicability to younger and older age groups.
In addition the literature is principally North American in origin and based on US samples and DSM-IV criteria only, often recruiting mainly Caucasian males within mid-childhood. Applicability to the UK population is uncertain; for example, there is only limited information on non-Caucasians and females.
However, some areas of research wereamore robust, particularly the up-to-date research on neurostimulant and behavioural treatments.26–28 Cited research of adequate and acceptable quality is annotated with an appropriate grade of recommendation.
The levels of evidence and grades of r!commendation have been published previously in Guidelines in Practice (e.g. April 2001; 4(4): 20), and are contained within the guideline8 (also available at www.sign.ac.uk). 'Good practice points' agreed by the multidisciplinary development group are also included.
Figure 1 (below) shows the Quick Reference Guide, and Tables 3, 4 and 5 (below) summarise the key points and evidence levels for assessment, non-pharmacological and pharmacological treatment of ADHD/HKD respectively.
|Figure 1: Attention Deficit and Hyperkinetic Disorders in Children and Young People – Quick Reference Guide|
|© Scottish Intercollegiate Guidelines Network 2001|
|Table 3: Summary of key guideline points for assessing ADHD/HKD|
Evidence level B
Evidence level C
Assess the child's presentation in his/her educational placement in order to confirm diagnosis and identify educational under-achievement
'Good practice points'
NB. The presence of sleep difficulty is not necessary for diagnosis
|Table 4: Summary of key points in non-pharmacological treatment of ADHD/HKD|
Evidence level A
Evidence level B
Note – there are no robust studies to indicate that on current evidence it is possible to recommend restriction or elimination diets or supplementary minerals or fatty acids for children with ADHD/HKD. The SIGN development group found no research studies of an acceptable standard to support the use of homeopathic or chiropractic remedies, EMG or EEG biofeedback or other measures such as Chinese herbal medicine.
|Table 5: Summary of key points in the pharmacological therapy of ADHD/HKD|
Evidence level A
Appropriate guidance is given regarding prescribing and monitoring of both of the above drug groups.
Evidence level C
'Good practice points'
Finally, the guideline emphasises the importance of individualising treatment, depending on the needs of the child, and emphasises long-term multidisciplinary management.
Clinical experience also reveals that families differ considerably in their capacity to cope with the pressures resulting from ADHD/HKD on a day-to-day basis. Consequently, social support may be required, including consideration of financial support, befriending and respite care, and linkage with self-help groups.
How will the guideline improve patient care?
It is hoped that the guideline will increase awareness and knowledge of ADHD/HKD, leading to earlier recognition, referral, and subsequently appropriate assessment by child and family psychiatrists or paediatricians.
Pitfalls in diagnosis such as over-reliance on observed behaviour in outpatient settings, or needless insistence on the presence of sleep disorder, are clarified.
The importance of attention to detail in history taking and confirmation of 'cross-situational' difficulties by consultation with school or nursery is stressed.
Standardised behavioural questionnaires can be useful in diagnosis, whereas psychometric tests and other assessment tools such as actometers or computerised continuous performance tests have not proved to be clinically discriminating.
Adequate management then depends on a satisfactory combination of pharmacological, behavioural (psyhological) and educational approaches and good communication between specialist, GP, teachers and psychologists.
Referral to the guideline and an understanding of the strengths and weaknesses of various treatment approaches should be of value. It is hoped that guideline evidence will promote acceptance of the view that children with ADHD/HKD can be effectively and safely treated with neurostimulants. This should lead to a significant increase in the number of children benefiting from such treatment.
An example of a suggested shared care protocol, which may help to reduce the number of hospital visits in children with ADHD/HKD, is available on the SIGN website. This promotes 6-monthly hospital visits in the long term with prescribing and monitoring of neurostimulants in primary care for interim visits, and liaison with the paediatrician or psychiatrist as necessary regarding any complications in treatment.
A list of information sources, relevant internet websites, and parent support and self-help groups is provided in the printed SIGN guideline and is also available on line.
Promoting best practice
It is hoped that the guideline will lead to local mechanisms being set up to ensure that the care provided for children and families where ADHD/HKD is reviewed against the relevant guideline recommendations.
Discussions should involve both clinical staff and management. Compliance can be monitored by various means including patient-specific reminders, CME and training, and clinical audit. Local service providers should ensure that minimum data sets are recorded, addressing assessment and management. Suggested areas for clinical audit include:
- Assessment of:
- Core symptoms
- Psychosocial functioning
- Family functioning
- Number and nature of interventions
- Numberof professionals and specialists involved in management
- Number of contacts with service
- Assessment of patient and family satisfaction.
Recommendations for research
The guideline development group was struck by the lack of epidemiological information available to them regarding the prevalence and treatment of ADHD/HKD in Scotland, and suggested that a national survey, including assessment of regional/ postcode stimulant prescribing, would be of value.
Other recommendations included further research into the complex relationships between sleep and ADHD/HKD, longer-term treatment studies across a wider age range, 'multi-modal' treatment studies, and research to determine when treatment should be discontinued.
Finally, further basic research should combine modern genetic, neuropsychological, and non-invasive neuro-imaging techniques to try to elucidate further the underlying causes of ADHD/HKD.
This SIGN Guideline was issued in July 2001 and will be considered for review in 2003, or sooner if new evidence becomes available. Any update to the guideline in the interim period will be noted on the SIGN website (www.sign.ac.uk)
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