Dr Natasha Halliwell examines the latest recommendations from NICE on recognising, treating, and managing attention deficit hyperactivity disorder

halliwell natasha

Dr Natasha Halliwell

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Read this article to learn more about:

  • recognising and identifying ADHD symptoms in individuals at increased risk
  • how GPs should be involved in management of ADHD, particularly maintenance and monitoring
  • support for patients with ADHD and their families or carers.

Key points

Implementation actions for STPs and ICSs

Understanding of and experience with attention deficit hyperactivity disorder (ADHD) is continuously evolving, and emerging evidence has helped to define its management. The current NICE Guideline (NG) 87 on ADHD, Attention deficit hyperactivity disorder: diagnosis and management,1 includes new and amended recommendations that reflect the latest evidence for best practice. Published in March 2018, NG871 updates and replaces Clinical Guideline (CG) 72.

This article focuses on the new recommendations in NG87, which cover recognition, information and support, managing ADHD (including non-pharmacological treatment), medication, follow up and monitoring, adherence, and review and discontinuation of medication.

Features of ADHD

Attention deficit hyperactivity disorder is characterised by excessive core symptoms of hyperactivity, impulsivity, and inattention. Symptoms are often evident in early life and may persist into adulthood, causing significant functional impairment of psychological, social, and/or educational/occupational domains across several settings. As a result, ADHD can have a significant adverse impact on a person’s quality of life if left undiagnosed or inappropriately treated.2

Symptoms of ADHD can overlap with those of related disorders, such as autism spectrum disorder.3 In children, ADHD often coexists with disorders of mood, conduct, learning, motor control, language, communication, and anxiety disorders,4 whereas in adults, ADHD often coexists with major depression, anxiety disorder, personality disorders, bipolar disorder, obsessive-compulsive disorder, and substance misuse.5,6

The causes of ADHD are not fully understood, but there are associated risk factors and genetic factors that can have an influence.7 Older family members of children and young people with diagnosed with ADHD, such as parents, may have had an ADHD diagnosis missed previously.

The impact of ADHD may vary in severity according to the level of impairment, pervasiveness, and familial and social context. Symptoms and impact can change over time and impairment may be reduced through environmental modifications.

Recognition

Primary care healthcare professionals should be aware of the increased prevalence in specific groups (see Box 1)1 and the under-diagnosis of ADHD in girls and women, so that opportunities for assessment and referral are not missed.1

Attention deficit hyperactivity disorder is thought to be under-recognised in girls and women because its symptoms can be understated and overlooked. Girls and women are less likely to be referred for assessment for ADHD, more likely to have undiagnosed ADHD, and more likely to receive an incorrect diagnosis of another mental health or neurodevelopmental condition.1

Box 1: Specific groups with an increased prevalence of ADHD1

People in the following groups may have increased prevalence of ADHD compared with the general population:

  • people born preterm (see NICE Guideline 72 on Developmental follow-up of children and young people born preterm8)
  • looked-after children and young people
  • children and young people diagnosed with oppositional defiant disorder or conduct disorder
  • children and young people with mood disorders (e.g. anxiety and depression)
  • people with a close family member diagnosed with ADHD
  • people with epilepsy
  • people with neurodevelopmental disorders (e.g. autism spectrum disorder, tic disorders, learning disability [intellectual disability] and specific learning difficulties)
  • adults with a mental health condition
  • people with a history of substance misuse
  • people known to the Youth Justice System or Adult Criminal Justice System
  • people with acquired brain injury.

© NICE 2018 Attention deficit hyperactivity disorder: diagnosis and management. Available from www.nice.org.uk/ng87 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

Identification and referral

General practitioners and other primary care professionals play an important role in identifying and referring children and young people who have persistent behavioural and/or attention problems with at least moderate impairment to secondary care for assessment.1 Parents or carers may be offered a referral for group-based ADHD-focused support which need not wait for a formal diagnosis.

Diagnosis of ADHD is made by a specialist psychiatrist, paediatrician, or other appropriately qualified healthcare professional, on the basis of a thorough clinical, psychosocial, and psychiatric history and assessment.

Information and support

Following a diagnosis of ADHD, children, young people, and adults, and their carers and families should be provided with relevant information about ADHD in formats to suit their individual needs.1,9

Support is initiated by the diagnosing specialist, but there are likely be opportunities to reinforce the relevant messages in primary care between the patient’s review appointments with the specialist. A structured discussion of key areas following a diagnosis of ADHD is likely to improve the quality of life of individuals with ADHD and enable better management of their symptoms (see Box 2). Additionally, the benefits of a healthy diet and exercise, and treatment choices, should be discussed. Family, teachers, peers, and the media can influence decisions around treatment. The structured discussion should inform the patient’s shared treatment plan, which may be shared more widely, for example, with families, schools, or social care.

Supporting people with ADHD

People receiving a diagnosis of ADHD, their families or carers, and people who have had an assessment but whose symptoms and impairment fall short of a diagnosis of ADHD, should be informed about sources of information including: local and national support groups and voluntary organisations; websites; and support for education and employment.1

Box 2: Structured discussion following a diagnosis of ADHD1

Following a diagnosis of ADHD, the specialist will have a structured discussion with people (and their families or carers as appropriate) about how ADHD could affect their life. This could include:

  • the positive impacts of receiving a diagnosis, such as:
    • improving their understanding of symptoms
    • identifying and building on individual strengths
    • improving access to services
  • the negative impacts of receiving a diagnosis, such as stigma and labelling
  • a greater tendency for impulsive behaviour
  • the importance of environmental modifications [changes made to the physical environment] to reduce the impact of ADHD symptoms
  • education issues (e.g. reasonable adjustments at school and college)
  • employment issues (e.g. impact on career choices and rights to reasonable adjustments in the workplace)
  • social relationship issues
  • the challenges of managing ADHD when a person has coexisting neurodevelopmental or mental health conditions
  • the increased risk of substance misuse and self-medication
  • the possible effect on driving (e.g. ADHD symptoms may impair a person’s driving and ADHD medication may improve this; people with ADHD must declare their diagnosis to the DVLA if their ADHD symptoms or medication affect their ability to drive safely).

© NICE 2018 Attention deficit hyperactivity disorder: diagnosis and management. Available from www.nice.org.uk/ng87 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

Supporting families and carers

The impact of ADHD may extend to the individual’s family members or carers and it may help to discuss any concerns they have; they may need encouragement to join self-help and support groups and seek an assessment of their own personal, social, and mental health needs.

A parent with ADHD who has a child with ADHD may require extra support with organisational strategies; for example, adherence to treatment and daily school routines.1

Parents and carers may need to be reassured that any recommendation of parent training/education does not imply bad parenting; rather, the aim is to optimise parenting skills to meet the above-average parenting needs of children and young people with ADHD.1

Parents and carers of children and young people with ADHD should be offered advice about the importance of:1

  • positive parent– and carer–child contact
  • clear and appropriate rules about behaviour and consistent management
  • structure in the child’s or young person’s day.

The families and carers of adults with ADHD should be offered advice about:1

  • how ADHD may affect relationships
  • how ADHD may affect a person’s functioning
  • the importance of structure in daily activities.

Involving schools, colleges, and universities

Schools, colleges, and universities may sometimes question a diagnosis of ADHD or fail to understand how symptoms can affect daily functioning.9 Communication with an individual’s school, college, or university (usually by the specialist) is particularly helpful when:1

  • ADHD is diagnosed
  • an individual’s symptoms change
  • transition between schools or from school to college or university occurs.

The specialist will need to explain how the symptoms of ADHD are likely to affect the individual at school, college, or university, and provide information about the shared treatment plan and any special educational needs that have already been identified.1 This includes advice for reasonable adjustments and environmental modifications within the educational placement and the value of feedback to people with ADHD and their healthcare professionals.

Involving other healthcare professionals

Healthcare professionals treating coexisting conditions may need details of the shared treatment plan and information on how an individual’s ADHD symptoms may affect their behaviour, for example in terms of organisation, time management, motivation, and adherence to treatment.

Managing ADHD

Untreated ADHD can have far-reaching, long-lasting negative effects on a child’s or young person’s life (for example, in terms of academic performance, interpersonal relationships, work, personal issues, substance use, and driving). Untreated ADHD can also have a negative impact on the lives of adults, as it is associated with lower educational attainment and higher criminality.1

Primary care is ideally placed to provide accessible monitoring and prescribing for people receiving treatment for ADHD under shared care arrangements. Clear lines of communication between primary and secondary care are essential.1

Individuals with ADHD may be referred for cognitive behavioural therapy (CBT) via the GP where there is significant residual impairment despite other management strategies. Cognitive behavioural therapy may be suggested for adults with ADHD who choose not to have medication, have difficulty adhering to medication, or cannot tolerate it.

NICE Guideline 87 makes specific recommendations about managing ADHD in children under 5 years, children aged 5 years and over and young people, and adults. These recommendations are aimed at healthcare professionals with training and expertise in diagnosing and managing ADHD and will not be discussed in detail in this article.1

Medication

All medication for ADHD should only be initiated by a healthcare professional with training and expertise in diagnosing and managing ADHD.1

Medication is recommended for children aged 5 years and over and young people, and adults when the symptoms of ADHD are persistent and cause significant impairment despite the implementation and review of environmental modifications. Medication offers a better balance of benefits and costs than non-pharmacological interventions alone and NICE recommendations take into account concerns about medication for ADHD, particularly regarding the long-term adverse effects of medication in growing children.1

NICE Guideline 87 recommends early specialist review of people taking medication for ADHD to monitor its effectiveness and check for adverse effects. Regular review is necessary to ensure that medication is only continued for as long as it is needed. People with ADHD may make an informed choice to discontinue medication and accept non-pharmacological treatments only.

After initiation, titration, and dose stabilisation, prescribing and monitoring should be carried out under Shared Care Protocol arrangements with primary care.1 Table 1 lists the medications used for treating ADHD.

Table 1: Medication choices for attention deficit hyperactivity disorder*1
Treatment stageChildren aged 5 years and over and young peopleAdults

First-line pharmacological treatment:

Methylphenidate (either short or long acting)

Lisdexamfetamine or methylphenidate

If a 6-week trial of first-line choices at an adequate dose has not delivered enough benefit in terms of reduced ADHD symptoms and associated impairment, consider switching to:

Lisdexamfetamine

Lisdexamfetamine (if methylphenidate used first line) or  methylphenidate (if lisdexamfetamine used first line)

If the patient’s ADHD symptoms are responding to lisdexamfetamine but they cannot tolerate the longer effect profile, consider:

Dexamfetamine

Dexamfetamine

If the patient cannot tolerate methylphenidate or lisdexamfetamine or if symptoms have not responded to separate 6-week trials of lisdexamfetamine and methylphenidate, offer:

Atomoxetine or guanfacine

Atomoxetine

* NB At the time of publication (July 2018), the medicines used for the treatment of ADHD did not have a UK marketing authorisation for all of the indications mentioned in this table. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing and managing medicines and devices10 for further information.

Refer to NICE Guideline 87 for full details of the recommendations about medication choice for ADHD. NICE 2018 Attention deficit hyperactivity disorder: diagnosis and management. Available from www.nice.org.uk/ng87

ADHD=attention deficit hyperactivity disorder

Maintenance and monitoring

Individuals receiving treatment for ADHD require review and follow up according to the severity of their condition, regardless of whether or not they are taking medication.

People taking medication for ADHD are encouraged to record any adverse effects between reviews. Some of the most troublesome adverse effects are sleep disturbance, decreased appetite, and weight changes.

NICE Guideline 871 recommends the monitoring of height, weight, heart rate, blood pressure, and adverse effects of medication (see Box 3). These can be monitored in primary care between specialist reviews.

Box 3: Maintenance and monitoring of people taking medication for ADHD1

Height and weight

  • Measure height every 6 months in children and young people
  • Measure weight:
    • every 3 months in children 10 years and under
    • at 3 and 6 months after starting treatment in children over 10 years and young people, and every 6 months thereafter, or more often if concerns arise
    • every 6 months in adults
  • Plot height and weight of children and young people on a growth chart and ensure review by the healthcare professional responsible for treatment
  • See the full guideline for recommendations about what to do if weight loss is a clinical concern, if the child or young person’s height is significantly affected by their medication, or if an adult with ADHD experiences weight change as a result of their treatment.

Cardiovascular

  • Monitor heart rate and blood pressure and compare with the normal range for age before and after each dose change and every 6 months
  • Do not offer routine blood tests (including liver function tests) or electrocardiograms to people taking medication for ADHD unless there is a clinical indication
  • If a person taking ADHD medication has sustained resting tachycardia (more than 120 beats per minute), arrhythmia or systolic blood pressure greater than the 95th percentile (or a clinically significant increase) measured on two occasions, reduce their dose and refer them to a paediatric hypertension specialist or adult physician
  • If a person taking guanfacine has sustained orthostatic hypotension or fainting episodes, reduce their dose or switch to another ADHD medication.*

Tics

  • If a person taking stimulants develops tics, think about whether:
    • the tics are related to the stimulant (tics naturally wax and wane) and
    • the impairment associated with the tics outweighs the benefits of ADHD treatment
  • If tics are stimulant related, reduce the stimulant dose, or consider changing to guanfacine (in children aged 5 years and over and young people only), atomoxetine or stopping medication.*

Sexual dysfunction

  • Monitor young people and adults for sexual dysfunction (that is, erectile and ejaculatory dysfunction) as a potential adverse effect of atomoxetine.

Seizures

  • If a person develops new seizures or a worsening of existing seizures, review their ADHD medication and stop any medication that might be contributing to the seizures. After investigation, cautiously reintroduce ADHD medication if it is unlikely to be the cause of the seizures.*

Sleep

  • Monitor changes in sleep pattern (e.g. with a sleep diary) and adjust medication accordingly.*

Worsening behaviour

  • Monitor the behavioural response to medication, and if behaviour worsens adjust medication and review the diagnosis*
  • People experiencing a psychotic episode should be referred for urgent specialist review and ADHD medication stopped.

Stimulant diversion

  • Healthcare professionals and parents or carers should monitor changes in the potential for stimulant misuse and diversion, which may come with changes in circumstances and age.

* Any changes to ADHD medication should be made by a specialist or under specialist guidance.

† At the time of publication (March 2018), atomoxetine was licensed for use in adults with symptoms of ADHD that pre-existed in childhood. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing and managing medicines and devices10 for further information.

Adapted from © NICE 2018 Attention deficit hyperactivity disorder: diagnosis and management. Available from www.nice.org.uk/ng87 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

Adherence to treatment

Several factors can affect adherence to both medication and non-pharmacological treatments.

The symptoms of ADHD may lead to people having difficulty adhering to treatment plans (for example, remembering to order and collect medication).1

Misconceptions about the effects of treatment and worries about adverse effects are common. The balance of risks and benefits of any treatment for ADHD is addressed during discussion with the specialist. People may need reassurance that medication will not change their personality.1

Attitudes of peers and others close to a person with ADHD can influence adherence. Parents and carers should be encouraged to oversee ADHD medication for children and young people.1

People with ADHD should be assisted to follow strategies that support adherence to both medication and non-pharmacological treatments (see Box 4).

Box 4: Supporting adherence to ADHD treatment1

Encourage the person with ADHD to use the following strategies to support adherence to treatment:

  • being responsible for their own health, including taking their medication as needed
  • following clear instructions about how to take the medication in picture or written format, which may include information on dose, duration, adverse effects, dosage schedule (the instructions should stay with the medication, e.g. a sticker on the side of the packet)
  • using visual reminders to take medication regularly (e.g. apps, alarms, clocks, pill dispensers, or notes on calendars or fridges)
  • taking medication as part of their daily routine (e.g. before meals or after brushing teeth)
  • attending peer support groups (for both the person with ADHD and for the families and carers).

Support adherence to non-pharmacological treatments (e.g. CBT) by discussing the following:

  • the balance of risks and benefits (e.g. how the treatment can have a positive effect on ADHD symptoms)
  • the potential barriers to continuing treatment, including:
    • not being sure if it is making any difference
    • the time and organisational skills needed to commit to the treatment
    • the time that might be needed outside of the sessions (e.g. to complete homework)
  • strategies to deal with any identified barriers (e.g. scheduling sessions to minimise inconvenience or seeking courses with child care provision)
  • a possible effect of treatment being increased self-awareness, and the challenging impact this may have on the person and the people around them
  • the importance of long-term adherence beyond the duration of any initial programme (e.g. by attending follow-up/refresher support to sustain learned strategies).

ADHD=attention deficit hyperactivity disorder; CBT=cognitive behavioural therapy

© NICE 2018 Attention deficit hyperactivity disorder: diagnosis and management. Available from www.nice.org.uk/ng87 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

Conclusion

Early intervention is essential to minimise the impact of ADHD on the lives of children and young people; thus, individuals with ADHD must be supported to adhere to medication and non-pharmacological treatments. Diagnosis and treatment initiation is always carried out by an ADHD specialist; however, GPs and primary care healthcare professionals are well positioned to recognise and refer people who are at risk of ADHD, and provide ongoing support and monitoring to those with a confirmed ADHD diagnosis under shared care arrangements. NICE Guideline 87 has updated and introduced new recommendations about recognition, information and support, and follow-up and monitoring, which will help primary care professionals to define their management of this condition.

Dr Natasha Halliwell

GP with special interest in ADHD, Guildford 

Key points

  • ADHD often occurs with other related disorders and the symptoms can overlap
  • The prevalence of ADHD is higher in some groups than in the general population
  • ADHD is thought to be under-recognised in girls and women
  • When a child or young person presents in primary care with behavioural and/or attention problems suggestive of ADHD, primary care practitioners should determine the severity and impact of the problems
  • A diagnosis of ADHD should only be made by a specialist psychiatrist, paediatrician, or other appropriately qualified healthcare professional with training and expertise in the diagnosis of ADHD
  • People receiving a new diagnosis of ADHD should be provided with tailored information about ADHD suited to their individual needs
  • People with ADHD and their families and carers should be given information about group-based ADHD-focused support
  • People with ADHD should have a comprehensive, holistic shared treatment plan that addresses psychological, behavioural, and occupational or educational needs
  • Medication for ADHD should be initiated by a healthcare professional with training and expertise in diagnosing and managing ADHD:
    • medication is recommended only when symptoms are persistent and cause significant impairment despite environmental modifications
  • After titration and dose stabilisation, prescribing and monitoring of ADHD medication should be carried out under Shared Care Protocol arrangements with primary care
  • Children, young people, and adults receiving treatment for ADHD should have review and follow up based on the severity of their condition, regardless of whether or not they are taking medication:
    • monitoring should include height and weight, cardiovascular assessment, tics, sexual dysfunction, seizures, sleep, worsening behaviour, and stimulant diversion
  • Symptoms of ADHD, misconceptions about the effects of treatment, and attitudes of peers can influence adherence to treatment among people with ADHD
  • Individuals with ADHD should be encouraged to follow strategies that support adherence to both medication and non-pharmacological treatments.

ADHD=attention deficit hyperactivity disorder

Implementation actions for STPs and ICSs

written by Dr David Jenner, GP, Cullompton, Devon

The following implementation actions are designed to support STPs and ICSs with the challenges involved with implementing new guidance at a system level. Our aim is to help you consider how to deliver improvements to healthcare within the available resources. 

  • Conduct a baseline analysis to audit the current provision of services for ADHD against NICE’s updated recommendations
  • Invite fellow professionals from education, criminal justice, and other agencies to form part of this process because patients with ADHD often first present to them
  • Ensure that there is an active education programme for all those in education and primary healthcare services to raise awareness of possible ADHD symptoms
  • Establish and publicise clear referral pathways to facilitate support and diagnosis for people with possible ADHD and their parents and carers
  • Consider allowing direct referral from education services and school nursing without the need to involve the GP, to avoid delay.

STP=sustainability and transformation partnership; ICS=integrated care system; ADHD=attention deficit hyperactivity disorder

References

  1. NICE.Attention deficit hyperactivity disorder: diagnosis and management. NICE Guideline 87. NICE, 2018. Available at: www.nice.org.uk/ng87
  2. Caci H, Asherson P, Donfrancesco R et al. Daily life impairments associated with childhood/adolescent attention-deficit/hyperactivity disorder as recalled by adults: results from the European Lifetime Impairment Survey. CNS Spectr 2015; 20 (2); 112–121.
  3. van Steijn D, Richards J, Oerlemans A et al. The co-occurrence of autism spectrum disorder and attention-deficit/hyperactivity disorder symptoms in parents of children with ASD or ASD with ADHD. J Child Psychol Psychiatry 2012; 53 (9): 954–963.
  4. Cuffe S, Visser S, Holbrook J et al. Attention-deficit/hyperactivity disorder and psychiatric comorbidity: functional outcomes in a school-based sample of children. J Atten Disord 2015; Epublication. DOI: 10.1177/1087054715613437
  5. Biederman J, Monuteaux M, Mick E et al. Young adult outcome of attention deficit hyperactivity disorder: a controlled 10 year follow-up study. Psychol Med 2006; 36: 167–179.
  6. Schmidt S, Petermann F. Developmental psychopathology: attention deficit hyperactivity disorder (ADHD). BMC Psychiatry 2009; 9: 58–67.
  7. Mick E, Faraone S: Genetics of attention deficit hyperactivity disorder. Child Adolesc Psychiatr Clin N Am. 2008; 17: 261–284.
  8. NICE. Developmental follow-up of children and young people born preterm. NICE Guideline 72. NICE, 2017. Available at: www.nice.org.uk/ng72
  9. NICE. Attention deficit hyperactivity disorder (update). [B] Evidence reviews for Information and support for people with ADHD. NICE Guideline 87. NICE, 2018. Available at: www.nice.org.uk/guidance/ng87/evidence/b-information-and-support-pdf-4783686302
  10. General Medical Council. Good practice in prescribing and managing medicines and devices. GMC, 2013. Available at: www.gmc-uk.org/Prescribing_guidance.pdf_59055247.pdf