Rationale and impact

Recognition

Recommendations 1.2.1 and 1.2.2

Why the committee made the recommendations

Evidence showed that the prevalence of attention deficit hyperactivity disorder (ADHD) is higher in some groups than in the general population. The committee agreed that a recommendation was needed to raise awareness of these groups among non-specialists to help them avoid missing a diagnosis of ADHD. Although no evidence was identified for a higher prevalence in people known to the Youth Justice System or Adult Criminal Justice System and people with acquired brain injury, the committee agreed that in their experience, these groups often receive a late diagnosis of ADHD or a misdiagnosis. No evidence was found on the increased risk of missing a diagnosis of ADHD in girls. But the committee discussed the different symptoms often found in this group, and agreed to make a recommendation to raise awareness.

How the recommendations might affect practice

The recommendations are to raise awareness among non-specialists of a possible diagnosis of ADHD in groups of people that they are already seeing. The recommendations may increase the rates of diagnosis and referral for ADHD, but these should be accurate and therefore appropriate.

The committee's full discussion is in evidence review A: risk factors

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Information and support

Recommendations 1.4.1 to 1.4.13

Why the committee made the recommendations

Good information and support tailored to needs and circumstances are important for all people using NHS services, but some aspects are particularly important for people with ADHD. Evidence identified the need for information tailored to family circumstances, particularly when a child has ADHD, and to highlight the importance of daily structure for adults with ADHD.

Evidence showed the importance of discussing key areas following a diagnosis of ADHD, particularly the positive impacts of receiving a diagnosis, such as improving understanding of symptoms. The committee used the evidence and their experience to agree other areas for discussion, including driving and possible issues with education and employment. They noted that schools, colleges and universities may sometimes question a diagnosis of ADHD and not understand how symptoms can affect daily functioning. In addition, healthcare professionals treating a coexisting condition may not be aware of how ADHD symptoms may affect behaviour (organisation and time management) and adherence to treatment.

There was evidence that parents of children with ADHD often feel a sense of isolation when attending parent-training programmes. The committee agreed that healthcare professionals should explain to parents that an invitation to attend a parent-training programme does not imply bad parenting. The committee discussed the difficulties in families where parents may also have ADHD and made a recommendation to remind healthcare professionals that these families may need extra support.

In the committee's experience, people who are assessed for ADHD but not given a formal diagnosis are a neglected group who would benefit from advice on where to get support for troublesome symptoms.

How the recommendations might affect practice

The recommendations should reflect good current practice. Healthcare professionals may spend more time discussing the potential impacts of a diagnosis, but this is likely to mean improved quality of life for the person with ADHD and better management of their symptoms.

The committee's full discussion is in evidence review B: information and support.

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Managing ADHD – planning treatment

Recommendations 1.5.1 to 1.5.6

Why the committee made the recommendations

Evidence showed the importance of joint decision-making when planning treatment; particularly important was the discussion before starting treatment. This was also the committee's experience and they recommended that these discussions should be repeated throughout care.

The committee recommended key areas highlighted in the evidence that should be discussed with the person and their family before starting treatment. This included the benefits and harms of medications and consideration of these alongside other treatment choices.

In the committee's experience, other mental health and neurodevelopmental conditions may affect treatment choices and how successful these are. The committee emphasised the importance of a holistic approach to managing ADHD.

Evidence indicated that parents and carers of children with ADHD found it hard to make decisions about treatment and wanted time to think about the effect of any environmental modifications. The committee recognised that systematic use of environmental modifications is important for limiting the impact of ADHD symptoms. The committee agreed that the effect of environmental modifications should be reviewed and taken into account when considering other treatment options. The committee also recognised the importance of having the opportunity to regularly revisit and discuss earlier decisions and so recommended that healthcare professionals remind people that they can do this if they wish.

The committee acknowledged that it is important to include children and young people in any treatment discussions and recommended they should be encouraged to say how they feel. This should include their views on the aims and effect of any treatments. Healthcare professionals should be aware that these will change as the child matures and will need revisiting. The committee also recognised that it was important that young people and adults should have as much support as they need and should be asked if they would like someone to join discussions about treatment. Decisions around treatment can have many influences, including teachers, peers and the media.

How the recommendations might affect practice

The recommendations should reflect good current practice. Where practice might change, it is predominantly the approach to care that will be affected.

The committee's full discussion is in evidence review H: managing treatment.

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Managing ADHD – children under 5 years

Recommendations 1.5.7 to 1.5.9

Why the committee made the recommendations

In a very young child, the impact of ADHD symptoms on behaviour is assessed across different settings. Evidence showed a clinically important benefit on some measures of symptoms of an ADHD-focused group parent-training programme for children under 5 years. There was limited evidence on the efficacy of medication, and because of concerns and lack of evidence about the long-term effects of medication in very young children, particularly in terms of growth and development, the committee agreed to recommend a group-based parent-training programme as first-line treatment. However, the committee agreed that untreated ADHD can have far-reaching, long-lasting negative impacts on a child's life and some children may still have a significant impairment after the programme and environmental modifications. For these exceptional circumstances, the committee drew on their experience to recommend that healthcare professionals should seek further specialist advice, ideally from a tertiary service.

How the recommendations might affect practice

The recommendations reflect good current practice and do not indicate a change in practice from the 2008 recommendations.

Return to the recommendations.

Managing ADHD – children aged 5 years and over and young people

Recommendations 1.5.10 to 1.5.14

Why the committee made the recommendations

The committee discussed evidence on non-pharmacological interventions and evidence on medication for managing ADHD in children and young people.

Evidence indicated that some parents and carers of children aged 5 years and over and young people can benefit from group support. After discussion of current good practice and consideration of the balance of benefits and costs, the committee decided to recommend offering additional support that could be group-based ADHD-focused support and as few as 1 or 2 sessions for parents and carers of all children and young people with ADHD.

Evidence showed the benefit of medication in this age group in improving ADHD symptoms and this was in line with the committee's experience. The committee acknowledged there are concerns about recommending medication for ADHD and particularly the uncertainty over the long-term adverse effects of medication in growing children. However, the committee agreed that untreated ADHD can have far-reaching, long-lasting negative impacts on a child or young person's life (for example, affecting academic performance, interpersonal relationships, work, personal issues, substance use and driving). Medication offers a better balance of benefits and costs than non-pharmacological interventions, so the committee agreed to recommend it when ADHD symptoms are persistent and still causing a significant impairment in at least one domain of everyday life despite the implementation and review of environmental modifications. The committee was aware of the implications of medication in this young population and made several recommendations to ensure its responsible use. These include recommendations on:

  • checking that environmental modifications have been done before starting medication

  • carrying out a thorough baseline assessment

  • ensuring that medication is initiated only by healthcare professionals with training and expertise in diagnosing and managing ADHD

  • early review of medication to optimise its use (including checking for adverse effects)

  • regular review to ensure that medication is continued only for as long as it is needed

  • offering ADHD-focused support for all children and young people with ADHD.

These recommendations are in the sections on planning treatment, baseline assessment, care arrangements and review.

Combining a full parent-training programme with medication did not offer a good balance of benefits and costs for all children and young people in this age group, so the committee decided not to make a recommendation on this.

Some evidence showed a benefit of cognitive behavioural therapy (CBT) in young people with ADHD. The committee agreed that this should be considered when a young person has benefited from medication but still has symptoms that are causing a significant impairment. They used their experience to recommend areas that a programme should address.

How the recommendations might affect practice

The 2018 recommendations ensure that parents and carers of all children and young people with ADHD receive ADHD-focused information and support. Children and young people aged 5 years and over are offered medication by a healthcare professional with training and expertise in diagnosing and managing ADHD only if ADHD symptoms are still causing a significant impairment in at least one domain of their everyday life despite implementation of environmental modifications. This choice follows discussion with the child or young person and their parents or carers and a full baseline assessment. The recommendations make it clear that where a child has symptoms of oppositional defiant disorder or conduct disorder, parents and carers should be offered a parent-training programme in line with the recommendations in NICE's guideline on antisocial behaviour and conduct disorders.

The current categorisation of ADHD focuses on the presence of significant impairment in the different domains of everyday life and across settings, rather than using the previously used terms of mild, moderate and severe ADHD. There is considerable overlap with the guideline population described in the 2008 recommendation. The 2018 recommendations reflect current practice and are unlikely to result in a substantial increase in prescribing and resource use.

Return to the recommendations.

Managing ADHD – adults

Recommendations 1.5.15 to 1.5.18

Why the committee made the recommendations

Evidence directly comparing medication with non-pharmacological treatment supported the use of medication for first-line treatment of ADHD in adults. The committee acknowledged there are concerns about recommending medication for ADHD and in particular the uncertainty over the long-term benefits and the adverse effects of medication. However, the committee agreed that untreated ADHD can have a negative impact on a person's life, with lower educational attainment, and higher criminality. So they agreed to recommend medication when ADHD symptoms are still causing a significant impairment in at least one domain of everyday life despite environmental modifications.

Evidence indicated a benefit of non-pharmacological treatment, although this was less than for medication. There was also evidence of the importance of offering a choice of treatments, so the committee agreed that non-pharmacological treatment should be considered for adults who have made an informed choice not to have medication, have difficulty adhering to medication or have found they cannot tolerate medication or it is ineffective. Based on their experience, the committee recommended that the treatment may include elements of or a full programme of CBT and should include a structured supportive psychological intervention focused on ADHD, with regular follow‑up and information.

Combining medication with non-pharmacological treatment did not offer the best balance of benefits and costs, so the committee decided that combination treatment should only be considered when medication has offered some benefit but symptoms continue to cause a significant impairment.

How the recommendations might affect practice

The recommendations reflect good current practice.

Return to the recommendations.

Medication – care arrangements

Recommendations 1.7.2 and 1.7.29

Why the committee made the recommendations

The committee discussed the roles of different healthcare professionals in initiating, monitoring and reviewing medication. They agreed, based on their experience, that medication should only be initiated and titrated by a healthcare professional with training and expertise in diagnosing and managing ADHD. But after dose stabilisation, prescribing and monitoring should be carried out under Shared Care Protocol arrangements with primary care. The exact balance between primary and secondary care will vary depending on the circumstances of the person with ADHD and the available primary and secondary care services.

How the recommendations might affect practice

The recommendations reflect good current practice.

The committee's full discussion is in evidence review D: pharmacological safety.

Return to recommendations 1.7.2 and 1.7.29.

Medication – baseline assessment

Recommendations 1.7.4 to 1.7.6

Why the committee made the recommendations

The committee noted that it is important to carry out a baseline assessment before starting ADHD medication. Evidence was limited on what should be assessed clinically, but the committee used their experience and expert advice to recommend a general review of health and social circumstances, and a review of physical health, including an electrocardiogram (ECG), depending on the proposed treatment. The committee used their experience to outline criteria for referral for a cardiologist opinion.

How the recommendations might affect practice

The recommendations reflect good current practice.

The committee's full discussion is in evidence review D: pharmacological safety.

Return to the recommendations.

Medication – choice

Recommendations 1.7.7 to 1.7.19

Why the committee made the recommendations

Evidence showed a clinically important benefit for monotherapy with the stimulants methylphenidate and lisdexamfetamine compared with placebo or other drugs. This was supported by the committee's experience that stimulants work more quickly than non-stimulant drugs (for example, atomoxetine and guanfacine), which can take longer to have an effect. The committee used the evidence, their experience and the drug licensing to recommend methylphenidate as a treatment for children aged 5 years and over and young people, and lisdexamfetamine or methylphenidate as a treatment for adults.

The committee acknowledged the rising cost of dexamfetamine since 2008 and agreed that it should only be considered when lisdexamfetamine is effective but the longer effect profile is not well tolerated.

The committee agreed that if methylphenidate has not been effective for children aged over 5 years and young people, then lisdexamfetamine could be considered.

Atomoxetine and guanfacine were the non-stimulant drugs with the most convincing evidence. The committee noted that atomoxetine is more widely used and that there was stronger evidence for a benefit of atomoxetine compared with placebo than guanfacine compared with placebo. One trial directly comparing atomoxetine with guanfacine generally showed a clinically important benefit of guanfacine. Taking into account the licensing status of these drugs and the familiarity of most healthcare professionals with them, the committee recommended that in children aged 5 years and over and young people, either drug could be offered after intolerance or a lack of response to stimulants (methylphenidate and lisdexamfetamine). Because guanfacine is not licensed for use in adults and there was no evidence specifically supporting its use in this population, the committee recommended atomoxetine for adults with intolerance or a lack of response to stimulants.

Further medication choices

There was not enough evidence to justify specific recommendations for other drugs so the committee recommended that after at least one stimulant and non-stimulant had been tried, healthcare professionals should obtain a second opinion or refer to a tertiary service.

Medication choice for people with coexisting conditions

There was very little evidence on medication choice for people with ADHD and coexisting conditions and so the committee made research recommendations to address this gap. The committee agreed that neither the available evidence nor their experience justified a different choice of ADHD medication for people with ADHD and coexisting conditions, but there should be slower titration, more careful monitoring and recording of adverse effects, and regular weekly telephone contact. However, the committee recommended that ADHD medication should be stopped in people experiencing a psychotic episode because they agreed that ADHD medication could worsen psychotic symptoms.

How the recommendations might affect practice

The recommendations reflect good current practice.

The committee's full discussion is in evidence review C: pharmacological efficacy and sequencing.

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Medication – considerations when prescribing and dose titration

Recommendations 1.7.20 to 1.7.28

Why the committee made the recommendations

The committee discussed that the careful initiation of ADHD medication is key to a successful treatment plan. This includes starting and titrating medication according to the BNF or the BNF for Children and the person's tolerance until the dose is optimised (reduced symptoms, positive behaviour change, improvements in education, employment and relationships, and tolerable adverse effects). The committee agreed that healthcare professionals should be aware of the pharmacokinetic profiles of ADHD medication because preparations can vary in their profiles. This is important when considering which medication or formulation to prescribe.

How the recommendations might affect practice

The recommendations reflect good current practice.

The committee's full discussion is in evidence review D: pharmacological safety.

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Medication – monitoring effectiveness and adverse effects

Recommendations 1.8.1 to 1.8.19

Why the committee made the recommendations

Evidence showed clinically important differences in sleep disturbance, decreased appetite and weight changes in people taking ADHD medication. In the committee's experience, these are some of the most troublesome adverse effects. Because of concerns about decreased appetite and weight change, the committee advised that weight should be checked every 3 months in children aged 10 years and under, and at least every 6 months in older children and young people; BMI should be monitored in adults. The committee recommended that changes in sleep pattern should be recorded and medication adjusted accordingly.

There was some evidence that people on atomoxetine may experience sexual dysfunction, in particular erectile dysfunction, and the committee agreed that this should be monitored.

How the recommendations might affect practice

The committee noted that the recommendations will reinforce current best practice.

The committee's full discussion is in evidence review D: pharmacological safety.

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Adherence to treatment

Recommendations 1.9.1 to 1.9.6

Why the committee made the recommendations

The evidence identified several factors that affect adherence to treatment and these were supported by the committee's own experience.

The evidence highlighted time management and forgetfulness as particular issues, so the committee made a recommendation that healthcare professionals should be aware that people with ADHD may have problems remembering to order and collect medication. The committee provided examples of how healthcare professionals might encourage people to follow strategies that support adherence (for example, following clear instructions and using visual reminders).

A common worry about treatment is that it might change personality and the committee agreed that this could affect adherence to both medication and non-pharmacological treatments. Misconceptions about the effects of treatment and worries about adverse effects were common themes identified, and the committee agreed that it was important that healthcare professionals address these.

Evidence identified that the attitudes of people close to a person with ADHD can influence adherence. The committee agreed that it was important that although children and young people should take responsibility for their own health (including taking medication), parents and carers should oversee them.

The committee discussed that adherence to non-pharmacological treatment was an important issue that was rarely addressed. They used their own experience to recommend that healthcare professionals discuss the commitment, time and organisational skills needed for successful adherence to non-pharmacological treatment.

How the recommendations might affect practice

The committee noted that the recommendations will reinforce current best practice.

The committee's full discussion is in evidence review G: adherence.

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Review of medication and discontinuation

Recommendations 1.10.1 to 1.10.3

Why the committee made the recommendations

Evidence identified concerns around lack of follow‑up and the opportunity to review medication choices and this was supported by the committee's experience. They agreed that a yearly review with an ADHD specialist should be a comprehensive assessment that revisits the areas discussed when starting treatment but also the effect of current treatment. This would ensure that decisions around continuing or stopping treatment are fully informed.

Limited evidence showed possible worsening of ADHD symptoms on stopping medication but supported a reduction in adverse effects after withdrawal. The committee used their experience to make a recommendation on emphasising the importance of assessing the overall benefits and harms of medication as part of a review. The committee agreed that it was important to highlight the elements of a medication review that are important for someone with ADHD; they based the elements on evidence on adverse effects of medication, management of treatment, adherence and information and support.

How the recommendations might affect practice

The committee noted that the recommendations will reinforce current best practice.

The committee's full discussion is in evidence review I: withdrawal and drug holidays.

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  • National Institute for Health and Care Excellence (NICE)