Diagnosis and management of ADHD in children and adults
In March, NICE updated its guidance on the diagnosis and management of attention deficit hyperactivity disorder (ADHD) for the first time in 10 years. This article provides a summary of the new guideline’s main recommendations.
NICE has updated its 2008 clinical guideline (CG72) on attention deficit hyperactivity disorder (ADHD) and its 2006 technology appraisal (TA98) on methylphenidate, atomoxetine and dexamfetamine for the treatment of children and adolescents. Its new recommendations for the diagnosis and management of ADHD in children, young people and adults (NG87, March 2018; partially revised April 2018)1 includes sections on service organisation, recognition, referral and diagnosis that are largely unchanged since 2008. The advice on diet, revised in 2016, also remains. The other six sections – information and support, management, medication, maintenance and monitoring, adherence, and review and discontinuation – are mainly new.
Organisation, recognition and diagnosis
Services for people with ADHD encompass child, adolescent and adult mental healthcare. They should be provided by a multidisciplinary specialist team or clinic appropriate to the age group that, as well as diagnosing and managing ADHD, should develop protocols for working with primary care and establish transition arrangements from child to adult care. The need for continuing treatment should be assessed at age 16 years so that a smooth transition can be provided in line with separate NICE guidance on transitioning from children’s to adult services (NG43, February 2016).2
Every locality should have a multi-agency group representing all disciplines with an interest in ADHD: specialist ADHD teams, paediatric services, mental health and learning disability trusts, forensic services, child and adolescent mental health services, the Directorate for Children and Young People (including services for education and social services), parent support groups and others with a significant local involvement in ADHD services. This group is tasked with overseeing care and implementing the guideline’s recommendations. Everyone involved in delivering care should have proper training.
NICE has now added a list of risk factors for ADHD (see Table 1). It notes that ADHD is under-recognised in girls and women, who are therefore less likely to be referred for assessment, more likely to have undiagnosed ADHD and may be more likely to be misdiagnosed.
Table 1. Groups in which the prevalence of ADHD is increased compared with the general population. From: NICE. Attention deficit hyperactivity disorder: diagnosis and management. NG87. March 20181
In children, the pathway from first presentation to referral can be complex but when ADHD is suspected in primary care, the GP should assess the severity and impact of the child’s behaviour without attempting a diagnosis or initiating treatment. If there is an adverse impact on development or family life, the parents should be offered a referral to an ADHD support group; ADHD that is causing at least a moderate impairment after 10 weeks’ watchful waiting warrants referral but this should happen immediately when impairment is severe. Adults previously treated for ADHD at any age who have symptoms with moderate or severe psychological, social, educational or occupational impairment should be referred to general psychiatric services.
A diagnosis of ADHD should be made only by an experienced specialist according to DSM-5 or ICD-10 criteria for behaviour causing “at least moderate psychological, social and/or educational or occupational impairment based on interview and/or direct observation in multiple settings and be pervasive, occurring in two or more important settings including social, familial, educational and/or occupational settings”. The diagnosis should take into account the wider needs of the individual and the family/carers, and their mental and physical health.
Information and support
The recommendations should be implemented in line with the principles NICE sets out in its guidance on service user experience (CG136, 2011 and CG138, 2012)3,4 and on antisocial behaviour and conduct disorder in children and young people (CG158, 2013).5 A treatment plan should be based on a structured discussion with people with ADHD and their families/carers about how it will affect their lives, the benefits of receiving treatment and the negative effects of the diagnosis (such as stigma). Information about ADHD, its treatment and where to find support should be provided. With consent, education providers should be informed about the diagnosis and the person’s needs during times of change, such as moving between establishments.
Children and young people should be encouraged to express their views in discussions about their future and know that every treatment decision can be revisited. Treatment should be planned with the involvement of the person with ADHD and their family/carers at every step, especially in periods of change, and these discussions should be recorded in the treatment plan. This should cover information about medication and other treatment, the person’s preferences and concerns, the impact of co-morbidities and the importance of adherence. Providers should ensure continuity of care.
Recommendations for treatment are age-specific. For children under five years, the first approach is group parent training with referral to a specialist children’s service if this is unsuccessful; medication should be offered only after a second specialist opinion from an appropriate ADHD service. Group or individual parent training is also the first choice for children aged five years and over and young people (up to age 18 years). Medication may be indicated when symptoms still cause significant impairment in at least one domain after environmental modifications have been implemented and reviewed, the individual and parents/carers have discussed treatment, and a baseline assessment has been carried out. Cognitive behavioural therapy (CBT) should be considered when medication is beneficial but symptoms still cause significant impairment.
Medication is an earlier option for adults with ADHD, with the same provisos that apply to young people. Non-pharmacological options should be offered to those who don’t want medication or for whom it is unsuitable. Non-pharmacological treatment can be an adjunct or an alternative to medication and should include at least a structured supportive psychological intervention and regular follow-up either in person or by phone, and may include CBT.
People with ADHD benefit, like everyone else, from a balanced diet and exercise. NICE advises against elimination of artificial colourings and additives from the diet as a general principle but suggests that, if a clear link is suspected and supported by diary evidence, an exclusion diet should be supervised by a dietitian. Fatty acid supplementation should not be recommended and there is only limited evidence of the benefit of a highly restrictive ‘few foods’ diet.
Drug treatment is the province of the experienced specialist who is familiar with the pharmacokinetics of the various options – the exception being clinicians who are working under a shared care protocol. A baseline assessment should be carried out before starting medication, reviewing the individual’s mental and physical health and the indication for treatment. Cardiovascular safety is a particular concern and NICE lists the signs and symptoms that warrant a cardiology opinion (see Table 2) before prescribing.
Table 2. Signs and symptoms indicating the need for a cardiology opinion before prescribing medication for ADHD. From: NICE. Attention deficit hyperactivity disorder: diagnosis and management. NG87. March 20181
The choice of medication is determined by age. For children (aged five years and over) and young people, the drug of first choice is methylphenidate (either long-acting or immediate-release). If, after six weeks at an adequate dose, this does not sufficiently reduce symptoms and impairment, a switch to lisdexamfetamine should be considered. For those unable to tolerate the long duration of action of lisdexamfetamine, dexamfetamine is an alternative. If adverse effects prove intolerable or six-week trials with different formulations have not been successful, the remaining options are atomoxetine or guanfacine. If none of these are effective, a second opinion should be sought or the individual should be referred to a tertiary service.
For adults, the drugs of first choice are lisdexamfetamine or methylphenidate. If an adequate six-week trial of one is unsuccessful, a switch to the other should be considered. Again, dexamfetamine is an alternative if lisdexamfetamine is not tolerated due to its longer effect profile. If these drugs are not effective or not tolerated, the next step is atomoxetine.
Advice from a tertiary service should be sought before offering: guanfacine for adults; clonidine for children with ADHD and sleep disturbance, rages or tics; atypical antipsychotics in addition to stimulants for people with co-existing pervasive aggression, rages or irritability; or any medication not specified in the guideline. Medication choices for individuals who also have anxiety disorder, tic disorder or autism spectrum disorder are the same as for everyone else. If an acute psychotic or manic episode occurs during drug treatment, medication should be stopped and, after the episode has resolved, restarted or substituted with an alternative only after considering the individual circumstances, risks and benefits of medication.
The use of stimulants (eg methylphenidate) requires special consideration. People respond to them differently. They are controlled drugs and so prescribing and storage must meet specific requirements. Modified-release once-daily preparations offer convenience and better adherence. They reduce stigma because they can be taken outside school or work hours and they avoid the need to store a controlled drug at school. They are also associated with a lower risk of stimulant misuse and diversion than immediate-release preparations – which have a role when a flexible dose regimen is needed and during initial dose titration. It may be useful to take a modified-release preparation in the morning and an immediate-release one later in the day to prolong its effects.
Care is needed if there is a risk that a stimulant may be diverted for cognitive enhancement or appetite suppression; formulations that might easily be injected or insufflated should be avoided if there is a risk of misuse or diversion. Parents/carers and clinicians should be aware that the risk of stimulant misuse and diversion changes with age and circumstances.
The stimulant dose should be titrated to achieve the optimal balance between reduced symptoms, positive behaviour change, improvements in education, employment and relationships, and ensuring that adverse effects are tolerable. Titration should be carried out with care: NICE advises parents and teachers to record symptoms, impairment and adverse effects at baseline and at each dose change using standard assessment scales; progress should be reviewed weekly with a specialist. Titration should be carried out more slowly and monitored more frequently in people at increased risk of adverse effects or in whom change may be difficult to assess (see Table 3).
Table 3. Indications for slower dose titration and more frequent monitoring in people with ADHD. From: NICE. Attention deficit hyperactivity disorder: diagnosis and management. NG87. March 20181
Maintenance and monitoring
Treatment with stimulants is clearly not to be undertaken lightly for people of any age. Effectiveness and adverse effects should be monitored in a systematic way and recorded in the notes; individuals should be encouraged to monitor adverse effects for themselves using a checklist. Height and weight should be monitored frequently in children (the guideline specifies the intervals). Adults should have their weight measured every six months.
In addition to obtaining dietary advice, there are several strategies if weight loss becomes a concern: take medication with or after food rather than before meals; have extra meals or snacks early in the morning or late in the evening when the stimulant’s effects have worn off; eat high-calorie foods of good nutritional value; take a planned break from treatment; and change medication. If a child’s growth is affected, consider a planned break during the school holidays.
Heart rate and blood pressure should be checked before and after each dose change and every six months. Sustained resting tachycardia (>120 bpm), arrhythmia or systolic blood pressure >95th percentile (or a clinically significant increase) measured on two occasions are indications to reduce the dose and refer to a paediatric hypertension specialist or adult physician.
Other adverse effects require specific actions. If sustained orthostatic hypotension or fainting episodes occur during treatment with guanfacine, the dose should be reduced or an alternative substituted. Tics vary in severity and may not be drug-induced but if they are caused by a stimulant and outweigh the benefits of treatment, options include switching to guanfacine (in children aged five years and over and young people only), atomoxetine, clonidine or stopping drug treatment. Young people and adults taking atomoxetine should be monitored for erectile and ejaculatory dysfunction. Medication should be stopped if new-onset or recurrence seizures occur and cautiously reintroduced only when it is not believed to be the cause. Sleep patterns should be monitored using a sleep diary and treatment adjusted as needed. The behavioural response to treatment should be monitored; if it worsens, medication should be adjusted and the diagnosis reviewed.
NICE’s guideline on medication adherence in adults (CG76, 2009)6 applies equally to children and young people. People with ADHD may have particular difficulty with adherence – for example, they may forget to order and collect their prescription. This can be tackled by promoting personal responsibility for treatment, addressing myths about side-effects, using visual reminders such as apps, advising people to take doses with meals and encouraging involvement with a support group. Support may also be needed to help people continue with psychological therapies, in particular tackling barriers such as lack of time and disillusionment with their effectiveness.
Review and discontinuation
Medication should be reviewed (see Table 4) at least annually by an experienced clinician, including a discussion about whether to continue treatment. Individuals should be involved in decisions about stopping treatment and encouraged to talk about their preferences for stopping or changing medication.
Table 4. Topics to cover in a comprehensive treatment review in people with ADHD. From: NICE. Attention deficit hyperactivity disorder: diagnosis and management. NG87. March 20181
NICE has produced another detailed and comprehensive guide to the management of ADHD, with recommendations for all aspects of care delivery in a single source. Its advice about the role of primary care and recommended medication is straightforward. The NICE quality standard has also been updated to take account of the changes. NICE estimates the guideline will cost less than £5 million per year to implement, so cost will hopefully not prove a barrier to improving services for people with ADHD and their families/carers.
Declaration of interests
None to declare.
Steve Chaplin is a medical writer specialising in therapeutics
1. National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder: diagnosis and management. NG87. March 2018 (revised April 2018). Available from: www.nice.org.uk/guidance/ng87. NICE guidance is prepared for the National Health Service in England, and is subject to regular review and may be updated or withdrawn. NICE has not checked the use of its content in this article to confirm that it accurately reflects the NICE publication from which it is taken.
2. National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services. NG43. Available from: www.nice.org.uk/guidance/ng43
3. National Institute for Health and Care Excellence. Service user experience in adult mental health: improving the experience of care for people using adult NHS mental health services. CG136. December 2011. Available from: www.nice.org.uk/guidance/cg136
4. National Institute for Health and Care Excellence. Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. CG138. February 2012. Available from: www.nice.org.uk/guidance/cg138
5. National Institute for Health and Care Excellence. Antisocial behaviour and conduct disorders in children and young people: recognition and management. CG158. March 2013 (updated April 2017). Available from: www.nice.org.uk/guidance/cg158
6. National Institute for Health and Care Excellence. Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence. CG76. January 2009. Available from: www.nice.org.uk/guidance/cg76