There was a pressing need for guidance on attention deficit hyperactivity disorder (ADHD) in 2008 at the time the NICE guideline on this condition was published.1,2 The disorder has itself caused controversy among a few doctors and many journalists because of fears that it may medicalise ordinary aspects of childhood. Additionally, at that time and even now, prescribing rates for ADHD varied greatly between different parts of the country, and many review articles were based on practice in the US, where there is a much greater reliance on medication than in the UK.
Unusually, NICE felt it had to consider whether ADHD could be considered as a valid disorder. To this end, it made an extensive review of the evidence for the coherence of symptoms, the extent to which they were harmful, and the associations with abnormalities of the brain. The conclusion was unequivocal—ADHD can indeed be considered to be a disability, there are strong neurobiological influences, and recognition is needed in order to provide effective therapies.
The full version of the NICE guideline provides a rather lengthy guide to the management of ADHD as well as a review of the effectiveness and cost of different therapies.1 Shorter versions are available on the NICE website (www.nice.org.uk) in the form of Clinical Guideline 72,2 the corresponding Quick Reference Guide,3 and an article in the BMJ.4 This Guidelines in Practice article draws out topics in ADHD that are particularly relevant for general practice and highlights some issues that have arisen subsequent to the development of the NICE guideline.
Detection and assessment in primary care
Key principles on the care of people with ADHD are summarised in Box 1.
|Box 1: Key recommendations from NICE on ADHD|
|ADHD=attention deficit hyperactivity disorder|
ADHD in children and young people
The NICE guideline did not support a case, based on current evidence, for a population-screening programme for ADHD in educational settings.1,2 If the disorder is not imposing impairment, then it is reasonable simply to note the presence of symptoms and flag up for future observation. Impairment can manifest itself in various forms, such as:1
- a breakdown of relationships at home or, short of that, an emotional atmosphere of rejection that can readily lead on to antisocial behaviour
- social incompetence and unpopularity with other children
- an inability to concentrate satisfactorily in school and therefore being held back in progress.
Any of the above impairments may be a cause for families or schools to seek advice from primary care. The diagnostic aim is to detect the presence of key features of ADHD—inattention, restlessness, and impulsiveness—even when these are not the principal issues raised in the consultation. For this reason, it is helpful to use one or more of the various scales that have been developed for screening purposes, such as Conners’ scales5 and the Strengths and Difficulties Questionnaire (www.sdqinfo.com). A diagnosis of ADHD should not be made on the basis of these scales alone1,2 but they do alert the healthcare professional to the need for further assessment. Many practitioners will find it helpful to obtain the rating scores from not only the parents or guardians, but also teachers or nursery workers.
The severity of ADHD should be judged by the intensity and range of symptoms, pervasiveness across different situations, and the presence of impairment in personal relationships and achievement.1,2
Care pathways for children and young people with ADHD are shown in Box 2. Most parents will be considered for referral to a service offering behaviourally oriented parent advice and training if their child has symptomatic features of ADHD.1,2 Such a service may be provided within primary care, or by social services, a school, or a child mental health practitioner. The use of behaviourally oriented parent training (a particular type of parent training/education based on the principles of behaviour modification) is supported by a significant amount of trial evidence6 and when provided in groups was shown to be cost effective in the NICE economic analysis.1 It is also helpful for behavioural problems other than ADHD (e.g. ‘oppositional disorder‘) and can be offered without waiting for a formal diagnostic label. Children failing to respond to behaviourally oriented parent training should be referred for specialist assessment.
The immediate response to a child or young person presenting with severe ADHD (i.e. when the child’s everyday life is impaired in most situations) should be to refer to child and adolescent mental health or developmental paediatric services for a comprehensive assessment. Full diagnosis is not a simple process and involves judgment about the contribution of different problems to overall impairment, consideration of biological and social influences, and a contextual decision about the best approach for the individual (see Box 3). In particular, medication should not be embarked on until after the full specialist assessment; it will often need to continue for years and the decision to prescribe (and the initial dose titration) should be managed by the specialist. Indeed, if a child is receiving medication for ADHD, but has not been fully assessed, they should still be referred.
Routine blood tests, an electrocardiogram, or an electroencephalograph are not required unless there is a clinical indication, but naturally the primary care doctor should be alert to any possible organic medical condition that could be masquerading as, or presenting with, ADHD (NB deafness, epilepsy, and brain illnesses are perhaps the most important1).
|Box 2: Care pathways for children and young people with ADHD|
|ADHD=attention deficit hyperactivity disorder|
ADHD in adults
Attention deficit hyperactivity disorder remains a problem for many adults and treating this condition is cost effective. There is a growing trend in the number of adults who are diagnosing themselves with ADHD and seeking a formal diagnosis or treatment. The NICE guidance on ADHD is worth quoting in full:1,2 ‘Adults presenting with symptoms of ADHD in primary care or general adult psychiatric services, who do not have a childhood diagnosis of ADHD, should be referred for assessment by a mental health specialist trained in the diagnosis and treatment of ADHD, where there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that:
- began during childhood and have persisted throughout life
- are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions)
- have resulted in or are associated with moderate or severe psychological, social and/or educational or occupational impairment.’
Increasingly, general psychiatrists are training themselves in the management of ADHD in adults and the UK Adult ADHD Network is a useful resource for information (ukaan.org).
|Box 3: Specific treatments for ADHD|
|ADHD=attention deficit hyperactivity disorder|
Post-diagnosis management in children and adults
As part of the specialist diagnostic process, patients will have been assessed for coexisting conditions, social, familial, and educational/occupational circumstances, and physical health, and specific treatments may have been advised (see Box 3). There will usually be shared-care agreements between primary and specialist care for the management of patients with ADHD.1,2 NICE recommends that specialist services should initiate medication, determine dosage, and provide ongoing review (e.g. annually), while GPs should prescribe medication as advised by the specialist, and monitor pulse rate, blood pressure, and height and weight (using age-standardised percentile charts) before and during treatment.1,2 Adverse events are not common, and should be reported back to the responsible specialist. Physical monitoring should occur approximately every 6 months if progress is steady, and more frequently if medication is altered.1,2
Generally, the NICE guideline received a positive response from professionals; however, there was some criticism from a few sources, which continued to reject the idea that ADHD is a valid disorder that can merit remediation.12 The media reception was also broadly positive because of the perception that the recommendations would restrict the use of medication to people with severe problems or with problems that are refractory to other approaches. The development of services for adults with ADHD is currently in progress but provision remains patchy and the transition into adult life can be problematic. Even if specialist services are no longer involved, it is still appropriate for the GP to continue prescribing. Specialist services should perform patient reviews, but these are not always available. Under these circumstances, it seems a reasonable course of action for the GP to continue to prescribe medication and to advise occasional periods without pharmacotherapy (e.g. annually) to assess continuing need by the patient’s report.
The most problematic step for people affected by ADHD is often to gain recognition of their condition. There are still some misconceptions within the medical professions that result in some families believing that their concerns are not being heard. Some people, for instance, think that the problems of poor attention and impulsiveness simply reflect social adversity or incompetence by parents or teachers. In fact, ADHD is strongly influenced by genetic factors and neuroimaging commonly reveals brain changes.13 It is true that ADHD can also have social causes—it can, for instance, follow severe early deprivation—but management does not depend on initial causes. Parent training can help in even the most obviously neurological cases; medication can also help even when the family environment is chaotic. It is helpful to avoid blaming parents.
Attention deficit hyperactivity disorder can be used as a euphemism for bad behaviour. This is not the case: many children with ADHD are well-behaved and conversely many children with outrageous behaviour do not have ADHD. The essence of ADHD is inattentiveness, disorganisation, and impulsiveness, and it is best viewed as a disability that can persist. Primary care has an important role here in being alert to the possibility that ADHD underlies behavioural or learning problems. Excessive emphasis should not be placed on observing a child’s behaviour in the consulting room as even very hyperactive children can seem quiet in this novel and anxiety inducing situation.
Another common fallacy is that medication is only effective for short periods and is therefore best avoided. This notion sometimes stems from misstatements in an influential ‘Panorama’ programme, for which the BBC subsequently apologised.14 Medication may or may not be helpful in the long term; periodic trials without medication are needed to find out if drug treatment is effective in an individual. This is part of the reason why shared care between primary and specialist services is necessary.
The role of diet in the treatment of ADHD continues to be controversial, and many families seek advice. Dietary supplements are not officially recommended: an ordinary healthy diet is usually the best advice. Fish oil supplements probably have a small effect15 and can be quite costly, so families should only persist with them if they are persuaded of their value. Elimination diets are troublesome, but can help some children. There is now clearer evidence that some children can have idiosyncratic behavioural reactions to some foods;16 the most common are wheat flour, artificial colourings, cows’ milk, and citrus fruits, but there are many others. It can be quite arduous to determine what is affecting an individual child. If parents want to take on this investigative work, then referral to a dietitian is a good way forward. A child should not remain on a limited food diet for long periods.
Effective treatment can usually keep ADHD problems within the normal range (i.e. no more than one standard deviation above the population mean). Primary care has an important role in recognition of ADHD, and the family doctor and practice nurse can be of great value to families in taking the problems seriously and offering advice and support.
There are several books available on ADHD, including People with hyperactivity,17 which contain useful information, such as advice for teachers, drug interaction lists, and guidance on psychological treatment.
Families seeking more information on ADHD may find help from local support groups in the voluntary sector. Attention Deficit Information Services provides a website (www.addiss.co.uk), a shop, and telephone advice (020 8952 2800).
- Commissioners should use the NICE guideline to define clear local pathways for the identification of ADHD and subsequent referral to specialist services of possible cases in the community
- These pathways should include the roles and referral responsibilities for educational professionals and other community based staff, such as health visitors
- Shared-care guidelines should be defined, with clear responsibilities for primary and secondary care in the initiation of medication, ongoing maintenance treatment, and monitoring
- Pharmacological therapies should be specified and agreed within local formularies, taking into consideration their licensing, comparative costs, and expert guidance from health technology assessments and the British National Formulary for children
- Commissioners should pay special attention to ensuring that specialist services offer a clearly defined transition between child and adolescent and adult services for patients reaching adulthood.
- National Collaborating Centre for Mental Health. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. London: The British Psychological Society and The Royal College of Psychiatrists 2009. Available at: www.nice.org.uk/guidance/CG72/Guidance
- National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. Clinical Guideline 72. London: NICE, 2008. Available at: www.nice.org.uk/guidance/CG72/NICEGuidance/pdf/English
- National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. Clinical Guideline 72. Quick Reference Guide. London: NICE, 2008. Available at: www.nice.org.uk/guidance/CG72/QuickRefGuide/pdf/English
- Kendall T, Taylor E, Perez A, Taylor C; Guideline Development Group. Diagnosis and management of attention-deficit/hyperactivity disorder in children, young people, and adults: summary of NICE guidance. BMJ 2008; 337: a1239.
- Conners C, Sitarenios G, Parker J et al. Revision and restandardization of the Conners Teaching Rating Scale (CTRS-R): factor structure, reliability and criterion validity. J Abnorm Child Psychol 1998; 26 (4): 279–291.
- Taylor E. The scientific basis of NICE and European guidelines. Child Care Health and Development 2010; 36: 27.
- Conners C, Casat C, Gualtieri C et al. Bupropion hydrochloride in attention deficit disorder with hyperactivity. J Am Acad Child Adolesc Psychiatry 1996; 35 (10): 1314–1321.
- Hazell P, Stuart, J. A randomized controlled trial of clonidine added to psychostimulant medication for hyperactive and aggressive children. J Am Acad Child Adolesc Psychiatry 2003; 42 (8): 886–894.
- Posey D, McDougle C. Guanfacine and guanfacine extended release: treatment for ADHD and related disorders. CNS Drug Rev 2007; 13 (4): 465–474.
- Biederman J, Spencer T. Non-stimulant treatments for ADHD. Eur Child Adolesc Psychiatry 2000; 9 Suppl 1: I51–I59.
- Swanson J, Greenhill L, Lopez F et al. Modafinil film-coated tablets in children and adolescents with attention-deficit/hyperactivity disorder: results of a randomized, double-blind, placebo-controlled, fixed-dose study followed by abrupt discontinuation. J Clin Psychiatry 2006; 67 (1): 137–147.
- Timimi S. Why diagnosis of ADHD has increased so rapidly in the west: a cultural perspective. In Timimi S, Lee J, editors. Rethinking ADHD. Hampshire: Palgrave Macmillan, 2006.
- Taylor E, Sonuga-Barke E. Disorders of attention and activity. In Rutter M, Bishop D, Pine D et al, (editors). Rutter's child and adolescent psychiatry. 5th edn. Oxford: Blackwell Publishing, 2008.
- BBC website. Panorama found in breach of BBC rules. news.bbc.co.uk/1/hi/8534718.stm (accessed 5 October 2011).
- Bloch M, Qawasmi A. Omega-3 fatty acid supplementation for the treatment of children with attention-deficit/hyperactivity disorder symptomatology: systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry 2011; 50 (10): 991–1000.
- Pelsser L, Frankena K, Toorman J et al. Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomised controlled trial. Lancet 2011; 377 (9764): 494–503.
- Taylor, E. People with hyperactivity: understanding and managing their problems. London: Mac Keith Press, 2007.G