NICE recommends that GPs should be able to recognise and refer cases of attention deficit hyperactivity disorder, says Dr Dave Coghill
In September 2008, NICE published a new guideline on the diagnosis and management of attention deficit hyperactivity disorder (ADHD) in children, young people, and adults.1,2 The guideline attracted much publicity and controversy, which was caused in part by NICE through misleading statements in its press release. This was unfortunate as it directed attention away from many of the very helpful and important recommendations.
Since 2001, there has been a number of guidelines on ADHD published in the UK, Europe, and the USA.3–8 However, NICE is to be congratulated for being the first group to cover comprehensively recognition, assessment, and treatment of ADHD from the age of 3 years onwards from a European perspective. (Europe has traditionally been much more conservative than the USA with respect to both diagnosis and treatment of ADHD.) The guidance is for children from the age of 3 years because diagnosis of ADHD before this age is unwise as it is very difficult to distinguish between normal and abnormal levels of activity, impulsivity, and inattention.
This guideline from NICE is relevant to GPs and their teams on various levels. It includes:2
- a specific section on the identification of ADHD in community settings, pre-diagnostic intervention, and referral to secondary services
- guidance on the assessment and management of ADHD—although these will mostly take place within a secondary care setting, GPs should familiarise themselves with this information so they know what to expect for their patients
- details of a stepped-care approach whereby primary care is involved not only in the initial identification and referral, but also in the ongoing management of established cases through locally agreed shared-care arrangements.
Identification of ADHD in children
Although there has been a big increase in the number of children diagnosed with ADHD over the past 10 years,9 the available evidence suggests that ADHD is still significantly under-recognised in the UK. A recent survey of ADHD services in Scotland found that the recognition rate was 0.6% of school-aged children and young people, with large variation between different regions.10 Comparison of this figure to the known prevalence of 3–5% reveals a significant disparity11—approximately 85% of children with ADHD remain undiagnosed. It is likely that this situation is similar in the rest of the UK.
While GPs are currently the gateway to referral for children with ADHD, it seems likely that they can also act as a barrier.12 NICE recommends that all primary care healthcare professionals—including health visitors, GPs, and practice nurses—and teachers and school nurses should have a basic understanding of ADHD.2 When these professionals see a child who has behavioural and/or attention problems that are suggestive of ADHD, they should be able to identify the core symptoms of inattention, hyperactivity, impulsivity, and their pervasiveness across different life situations, and the subsequent impairment.
NICE supports the use of rating scales, such as the freely available Strengths and Difficulties Questionnaire13 as adjuncts to, but not replacements for, clinical assessment.
Primary care and educational staff should liaise regarding children with suspected ADHD and cooperate in the referral process. The NICE guideline makes it clear that specialist child and adolescent mental health services (CAMHS) and paediatric services have specific responsibilities to provide appropriate training to facilitate this work, and that service commissioners will need to make funds available for this to happen.2
When ADHD is suspected, NICE recommends the following:2
- the healthcare professional should commence ‘watchful waiting’ for up to 10 weeks (while encouraging simple behavioural management and self-help techniques where impairment is mild to moderate)
- if there is no improvement or, if there is at least moderate impairment, the patient should be referred to a child psychiatrist, paediatrician, or specialist ADHD CAMHS for assessment
- full assessment of the patient in primary care is not recommended as the assessment process for ADHD is specialised, and requires time and training
- although pharmacological treatments for ADHD should not be initiated within primary care, in children with significant oppositional behaviours it may be helpful for primary care staff to consider whether referral to a parent-training/education programme would be useful. If so, this could be actioned early in the process without the need to wait for a formal diagnosis to be made. Therefore it is important for primary care staff to have access to these specialist programmes.
ADHD in adults
Recognising adults with ADHD is also important. Although only around 15% of individuals still have full-blown ADHD by the age of 25 years, approximately 65% have significant levels of persisting symptoms and ADHD-related impairment (described as ‘ADHD in partial remission’ in the NICE guideline).2 It is recommended by NICE that adults who present with impairing symptoms of ADHD (who did not have a childhood diagnosis of ADHD) should be referred for assessment to a mental health specialist who is trained in the diagnosis and treatment of this condition.1,2 This is sound advice and is supported by evidence, but few such specialists exist at present, and training of adult mental health practitioners in the assessment and treatment of ADHD is a priority.
Treatment of ADHD
Much of the confusion surrounding the publication of the NICE guideline was focused on the recommendations for treatment. The press picked up on some careless wording in the official press release—that ‘parent-training/education programmes should be offered as first-line treatment of ADHD’—and reported that NICE had ‘banned’ the use of drug treatment to treat ADHD. This is neither what the guideline nor the evidence actually states. The recommendations from NICE are actually very similar to those made in previous European guidelines,4,8 and suggest that:1,2
- treatment should always start with education of the patient and/or parent/carer/partner about the disorder and treatment options; and in the case of children, advice should be given to parents/carers about positive parenting and basic behavioural techniques
- for a pre-school child, drug treatment is not recommended—parents/carers should be offered referral to a parent-training/educational programme (preferably group-based) if this has not already been conducted
- for school-aged children with mild to moderately impairing ADHD, a group-based, parent-training/educational programme should be offered. This may also include a group treatment programme or individual psychological interventions for the child. If this is refused or ineffective then drug treatment may be considered
- for school-aged children with severely impairing ADHD, pharmacotherapy is usually the first-line treatment, but a group-based parent-training/educational programme should also be offered
- for adults with ADHD, pharmacotherapy is usually the first-line treatment unless it is ineffective or cognitive behavioural therapy is preferred.
While these recommendations have a degree of face validity and it is certainly true that psychological treatment approaches have a part to play in a comprehensive package of care for those with ADHD, it has to be pointed out that the evidence for the effectiveness of parent-training programmes in reducing ADHD is much less extensive than that for drug treatments. Furthermore, most studies included only pre-school and primary school-aged children, and there is very little evidence to support the effectiveness of psychological treatments in older children and adolescents. Here NICE seems to have worked on the assumption that a psychological treatment approach is inherently preferable to a pharmaceutical one. This may well be true but it is not evidence-based, and when taken together with the negative press coverage, it does run the risk of some children with significantly impairing (but not severe) ADHD being denied effective treatments for considerable periods of time.
On the other hand it is likely that, even if the guidance is followed correctly, a considerable proportion of those with ADHD will receive drug treatment at some point.
The current choice of pharmacological treatment for ADHD in the UK includes two stimulant drugs (methylphenidate and dexamfetamine), and a non-stimulant (atomoxetine). The NICE guideline recommends:1,2
- methylphenidate for patients with ADHD who do not have significant co-morbidity or who have co-morbid conduct problems
- methylphenidate or atomoxetine if the following are present: tics, Tourette’s syndrome, anxiety disorder, stimulant misuse, or risk of stimulant diversion
- atomoxetine if methylphenidate is ineffective or poorly tolerated.
In making these recommendations NICE appears to have applied much stricter criteria to the evidence on medicine than were applied to the psychological treatment trials. While methylphenidate was probably correctly identified as the preferred treatment in most cases, dexamfetamine—which is cheaper, almost certainly as effective, and has a similar profile of adverse effects—was designated as a third-line treatment. This is because dexamfetamine, unlike methylphenidate and atomoxetine, has not been the focus of recent industry-sponsored research programmes and is therefore subject to smaller and less rigorous studies. In my opinion the designation of dexamfetamine as a third-line therapy seems rather like throwing the baby out with the bathwater, as many of the children who do not respond to methylphenidate would respond well to dexamfetamine, but will now automatically be offered atomoxetine. Although effective, atomoxetine is more expensive, and, although there are no direct comparisons, it is almost certainly a less potent alternative.4
Other than making a referral for psychological treatments, GPs should not have to make decisions regarding which child receives what treatment as this is appropriately seen as a specialist task that should be carried out in secondary care. However, GPs will play an important role in the long-term management of those with ADHD through locally agreed shared-care arrangements. From experience these can work very well, with the primary care team assuming day-to-day responsibility for patient care and the prescription of drug treatment, and the secondary care team monitoring the overall progress on a regular basis and recommending changes in treatment as appropriate. It is not appropriate for primary care to be expected to manage children, young people or adults with ADHD on their own without specialist backup.
Despite the new NICE guideline on the management of ADHD containing some surprising decisions and uneven use of evidence, it is generally helpful and provides a useful template for care. For general practice the main message is to be aware of the possibility of ADHD in children, adolescents, and adults, and to become comfortable asking about symptoms of ADHD. The quick reference guide is particularly relevant for general practice and should be kept close at hand whenever seeing a child with a behavioural problem.14
- 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.
- National Collaborating Centre for Mental Health. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. London: NICE, 2008.
- American Academy of Pediatrics. Subcommittee on Attention-Deficit/Hyperactivity Disorder and Committee on Quality Improvement. Clinical practice guideline: treatment of the school-aged child with attention-deficit/hyperactivity disorder. Pediatrics 2001; 108 (4): 1033–1044.
- Banaschewski T, Coghill D, Santosh P et al. Long-acting medications for the hyperkinetic disorders. A systematic review and European treatment guideline. Eur Child Adolesc Psychiatry 2006; 15 (8): 476–495.
- Nutt D, Fone K, Asherson P et al; British Association for Psychopharmacology. Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. J Psychopharmacol 2007; 21 (1): 10–41.
- Pliszka S; AACAP Work Group on Quality Issues. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry 2007; 46 (7): 894–921.
- Scottish Intercollegiate Guidelines Network. Attention deficit and hyperkinetic disorders in children and young people. A national clinical guideline. SIGN 52. Edinburgh: SIGN, 2001.
- Taylor, E, Döpfner M, Sergeant J et al. European clinical guidelines for hyperkinetic disorder—first upgrade. Eur Child Adolesc Psychiatry 2004; 13 (Suppl 1): I7–30.
- Köster I, Schubert I, Döpfner M et al. Children and adolescents with hyperkinetic disorder. Frequency of the claims diagnosis in primary care based on the data of a regional Statutory Health Insurance Sample.Versichertenstichprobe AOK Hessen/KV Hessen (1998–2001). Z Kinder Jugendpsychiatr Psychother 2004; 32 (3): 157–166.
- NHS Quality Improvement Scotland. Attention deficit and hyperkinetic disorders—services over Scotland. Edinburgh: NHS Scotland, 2008.
- National Institute for Health and Care Excellence. Final Appraisal Determination: Methylphenidate, atomoxetine and dexamfetamine for attention deficit hyperactivity disorder (ADHD) in children and adolescents. London: NICE, 2005.
- Sayal K, Taylor E, Beecham J, Byrne P. Pathways to care in children at risk of attention-deficit hyperactivity disorder. Br J Psychiatry 2002; 181: 43–48.
- Goodman R, Ford T, Simmons H et al. Using the Strengths and Difficulties Questionnaire (SDQ) to screen for child psychiatric disorders in a community sample. Br J Psychiatry 2000; 177: 534–539.
- National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. Quick Reference Guide. London: NICE, 2008.G