Dr Natasha Halliwell discusses the role of primary care in minimising the adverse impact of attention deficit hyperactivity disorder on the lives of affected individuals
Read this article to learn more about:
- the role of primary care as part of an integrated team in identifying patients with possible ADHD
- how people's lives are affected by their ADHD
- the need for an early diagnosis.
A ttention deficit hyperactivity disorder (ADHD) is a common, chronic, and treatable neurobehavioural condition, affecting children, adolescents, and adults. Early identification and effective management can significantly improve the ability to function normally and the overall quality of life for the person with ADHD and their family. Those with unmanaged ADHD often experience unnecessary impairments and detrimental long-term consequences and there is a subsequent cost to society.1,2
There has been controversy among a few doctors and several journalists because of fears that ADHD may medicalise ordinary aspects of childhood.3
NICE Clinical Guideline (CG) 72 (see Boxes 1 and 2, below), which has recently been updated, has helped to increase awareness, among primary care professionals, of ADHD as a valid disorder and has improved confidence in recognising the wide range of presentations. NICE CG72 sets out care pathways for appropriate management of children, young people, and adults with ADHD, and advocates further training by ADHD specialist teams for primary care and education professionals.4
Box 2: NICE Pathways
This NICE guidance is part of the NICE Attention deficit hyperactivity disorder pathway.
NICE CG72 encourages integrated care between primary care professionals and multidisciplinary specialist ADHD teams to produce local care pathway protocols for shared-care arrangements. Good access to specialist services and effective communication is necessary for appropriate primary care support.4
Primary care professionals are a fundamental part of an integrated team in:4
- being aware of the wide and complex presentations of ADHD in primary care
- identifying and supporting patients with suspected ADHD
- referring those with significant impairment for specialist input
- providing post-diagnostic support including prescribing and monitoring under shared-care arrangements.
Currently, ADHD is under diagnosed, particularly in girls, and there is increasing awareness of ADHD in adults who may have struggled with impairments throughout their lives.5 The NICE guideline acknowledges that ADHD is a persisting disorder,4 and one review article estimated 40–60% of children and young people with ADHD go on to have behavioural problems in adulthood6,7 (see also Figure 1, below). Significant associated difficulties may include: continuing ADHD, personality disorders, emotional and social difficulties, substance misuse, unemployment, and involvement in crime.4 It is necessary to develop adult services and seamless transition between young person and adult services to accommodate the patient's needs.4
Features of ADHD
ADHD is a lifelong condition, characterised by the core symptoms of hyperactivity, impulsive behaviour, and inattention. Some people are predominantly hyperactive and impulsive, while others are largely inattentive. These symptoms change over time: overt hyperactivity often decreases with age, while impulsive behaviour and poor attention are enduring.8 ADHD is the most common neurobehavioural condition, affecting 3–9% of school-age children and 2% of adults worldwide.4,9
ADHD is strongly influenced by genetic factors and there is mounting evidence for neurobiological influences on brain structure and function.10 Symptoms are distributed throughout the population with varying severity but only those with significant impairment meet criteria for a diagnosis of ADHD.4 The cluster of core symptoms results in significant psychological, social and/or educational or occupational impairment that occurs across multiple domains and settings and persists over time.4
The biggest risk factor for developing ADHD is a positive family history, while other factors include premature birth and parental drug abuse, and smoking and/or drinking during pregnancy.11
Girls with ADHD are more likely to have the inattentive form of the disorder and tend to be less disruptive than boys, so their ADHD may be overlooked. Daydreaming and poor concentration may cause problems at school, but girls may also develop severe cognitive and language impairments and social difficulties. Children with impulsive behaviour have less ability to think of the consequences of actions or words. They can be disruptive and prone to accidents, with frequent visits to GP surgeries and accident and emergency departments.9
Symptoms of significant ADHD are associated with at least a moderate degree of psychological, social, and/or educational or occupational impairment, which occur across multiple settings and domains of social or personal functioning.4 Impairments may be temporarily masked by sophisticated strategies.
Settings may include home, school, work, holiday, social activity, and consultations (although temporary masking may occur).
Domains may include schoolwork, homework, family relationships, physical risks, friendships, driving, household tasks, money management, partner relationships, and childcare.
Symptoms can overlap with those of related disorders that commonly coexist with ADHD.4 In children, these include autism spectrum disorder (ASD), disorders of mood and conduct, oppositional defiant disorder, learning difficulties, impaired motor control, poor executive functions (working memory, planning, organisation, and time management), communication difficulties, sleep disorders, tics/Tourette syndrome, epilepsy, and anxiety disorders. There is a high level of symptom overlap between ASD and ADHD, which share 50–72% of genetic factors.12 In adults, depression, personality disorders, bipolar disorder, obsessive compulsive disorder, and substance misuse may also coexist with ADHD.4
Children and young people with ADHD appear less socially skilled, and exhibit more noncompliant, inappropriate, and negative behaviours in social settings than their peers.13 Individuals with impulsive behaviour may find it extremely difficult to anticipate consequence-based punishments as a result of a biological lack of self-control. Some children with ADHD are more likely to develop antisocial behaviours, particularly those who have the early onset of conduct disorder symptoms, learning problems, and environmental adversity.14 This group is more likely to enter the justice system, with around 45% of young offenders meeting criteria for ADHD15 (see Figure 1, above).
The 'bad parenting' misjudgment
ADHD is not synonymous with bad behaviour: children with ADHD may be well behaved and many who behave dreadfully do not have ADHD. Attributing difficult behaviour to 'bad parenting' is unhelpful as parents may be struggling to cope with their child with ADHD and may have ADHD themselves.13 Effects of ADHD on mental health, behaviour, self-esteem, and emotional–behavioural role function in children and adolescents can cause significant dysfunction of family life (see Case Studies in Box 3, below).16 The pressure on the family can cause parental anxiety/depression and parents may feel that they are failing. Children and adolescents with ADHD may be unable to fulfil their learning potential and often achieve poor academic outcomes: there is a higher incidence of truancy, dropping out of school, and expulsion.
Box 3: Example case histories
Danny was a 14-year-old boy whose parents mentioned their concerns about his difficult and unruly behaviour to the GP over the years. He had been given a second fixed-term exclusion from school. From an early age, Danny was argumentative and oppositional, very black and white in his points of view and never wrong. It was always someone else’s fault. At preschool, his parents thought that he was very bright. He spoke early, took great interest in things around him, and had lots of friends. As the years went by, he very much underachieved. His self-esteem was low and he really did not enjoy anything much in life.
The GP referred Danny for an assessment and he was diagnosed with ADHD, which had been masked by his giftedness. A trial of psychostimulant medication strengthened his concentration and impulse control and over the next few months there was a clear improvement in his academic standard, self-esteem, and motivation.
Bridget was a 7-year-old girl whose parents expressed their concern to their GP that she was saying she was not good at anything, she did not want to go to school, and she had no friends. They noted that she seemed very anxious. Before starting school, they had always felt that she was a fairly bright girl but they noticed that she tended to drift off and daydream. On specific questioning, it became apparent that at school, Bridget was switching off, not listening to the teacher, and appeared to be in a world of her own. She was not making progress with her reading or maths and her writing was clumsy. When asked, her teachers felt that if Bridget was able to stay attentive, she would be able to cope with any learning or handwriting difficulties.
Bridget was referred for assessment and was diagnosed with inattentive ADHD. She was started on a low-dose psychostimulant medication and became brighter, more socially confident, and less anxious. Her academic work improved rapidly and she felt much happier at school.
Support for parents and carers to optimise parenting skills can help them to achieve the above-average parenting needs of children and young people with ADHD.4
Identification of ADHD in primary care
Individuals with ADHD can present to their primary care professional with a wide range of difficulties and in a variety of complex ways (see Box 4, below). It is useful to detect core symptoms of ADHD, but these may be masked by a number of factors including coexisting conditions, private schooling (attributed to smaller classes and hence fewer distractions and more opportunity for educational professionals to detect difficulties with struggling students and provide individual support), being gifted and talented, and receiving an inordinate amount of parental or other supports. Questionnaires or rating scales may help to identify core symptoms.
Box 4: Clinical presentation of ADHD in children and adults
- general learning difficulties or failure
- behaviour problems
- poor social functioning
- mood instability
- daydreaming and forgetfulness
- poor executive functions (organisation, working memory, planning, time management)
- persistently low self-esteem
- oppositional defiance disorder
- communication disorders
- specific learning difficulties (e.g. dyslexia)
- autistic spectrum disorder
- impaired motor control (clumsiness)/dyspraxia
- sleep problems
- reckless behaviour and poor appreciation of hazards
- conduct disorders
- recurrent school exclusion
- entry to the youth justice system.
- mood instability
- low self-esteem
- personality disorders
- bipolar disorder
- obsessive-compulsive disorder
- substance abuse disorder (drugs, alcohol)
- addictive disorder (e.g. gambling)
- marital conflict resulting in breakdown of relationships
- relationship difficulties with employers and colleagues
- difficulty keeping a job/unemployment
- inability to complete tasks (poor time management, procrastination, distractibility)
- dangerous driving and accidents
- poor money management
- childcare difficulties
- criminal behaviour
Assessment of the severity of suspected ADHD in a child, young person, or adult is a clinical judgement, which takes into consideration the level of impairment, pervasiveness, individual factors, and familial and social context. The views of children and young people are useful to determine the level of impairment they perceive.4
Some individuals may present with suspected ADHD for the first time as adults or may have been treated for ADHD as children with symptoms suggestive of continuing ADHD (see Box 4, above). Parents of a child diagnosed with ADHD may also recognise that they themselves have the condition.
Interventions and referral
Figure 2 (see below) outlines the interventions and referral procedures set out in the NICE guideline for people with ADHD presenting in primary care.
Before obtaining a formal diagnosis, primary care professionals can offer support and advice to patients with suspected ADHD and their parents or carers. Information on parent training, psychological interventions, dietary advice, and specialist assessment may be useful.
Psychological interventions include cognitive behavioural therapy and/ or social-skills training to focus on communication with peers, problem solving, self-control, listening skills, and how to deal with and express feelings.4
The GP needs to be informed if their patients are referred to secondary care by other community professionals, such as community paediatricians, educational psychologists, special educational needs coordinators, and social-care professionals.4
The diagnosis of ADHD and any initiation of drug therapy, should be made by a specialist in secondary care.4
General support and postdiagnostic advice
People with ADHD and their parents/carers may require advice about diet, behaviour management, and general care.4 Information can be given on local and national support and self-help groups, voluntary organisations, behavioural and psychological techniques, and positive parenting.
A diagnosis of ADHD may cause sensitivity to stigma in relation to mental illness.4 Involving people with ADHD and their parents/carers in their management, together with professional guidance on evidence-based information, helps to enable them to make informed decisions and improve compliance.
Major life changes in children and young people with ADHD, such as puberty, starting/changing schools, or the birth of a sibling, need to be anticipated to arrange adequate personal and social support or psychological treatment. Adolescents with ADHD benefit greatly from an understanding of the various difficulties concerning school, family, and friends. Advice can be given about the increased risk of antisocial behaviour, driving accidents, substance misuse, money management difficulties, and relationship problems (see Figure 1, above and Box 4, above).
Evidence on dietary advice was recently reviewed in the update to the NICE guideline, which encourages a balanced diet, good nutrition, and regular exercise for people with ADHD. The NICE guideline confirms that there is no evidence supporting any long-term benefits of a 'few food' diet for children with ADHD and only limited evidence of short-term benefits. Elimination of artificial colouring and additives from the diet, or the use of fatty acid supplements is not recommended.4
If food or drinks appear to influence hyperactive behaviour, the ADHD specialist may recommend keeping a diary and refer the patient to a dietitian for specific dietary management.4
Drug treatment of ADHD
Drug treatment should only be initiated by a healthcare professional who is an expert in ADHD, and only after comprehensive assessment and diagnosis.4 In children and adolescents, drug treatment is reserved for those with severe symptoms and impairment, or for those with moderate levels of impairment whose symptoms have not responded sufficiently to parent-training/education programmes or psychological treatment.4
As well as amelioration of core symptoms, there is almost always associated improvement to many of the impairments associated with ADHD and patient self-esteem. The extent of residual difficulties and coexisting conditions usually becomes apparent after a few months.
Psychostimulants available are methylphenidate (first-line) and dexamfetamine. They start to be effective within 20–30 minutes after taking and last between 4–12 hours, depending on the formulation. Long-acting formulations minimise the need to take doses during the schoolday, and may increase compliance and decrease the risk of stigmatisation by classmates and accountability of the school. Methylphenidate is not addictive as it is a sympathomimetic, not an amphetamine.
The non-psychostimulant, atomoxetine can be used when psychostimulants are inappropriate, ineffective, or not tolerated. Effects can take a few weeks to become apparent.
Ongoing prescribing and monitoring
Following titration and dose stabilisation, NICE NG72 recommends that continued prescribing and monitoring of drug therapy is carried out under locally agreed shared-care arrangements with primary care. Drug treatment for ADHD should be reviewed at least annually by a specialist.4
People taking methylphenidate, atomoxetine, or dexamfetamine should be regularly monitored:4
- measure height every 6 months in children and young people
- measure weight at 3 and 6 months after drug treatment has started and every 6 months thereafter in all age groups
- plot height and weight in children and young people on a growth chart for specialist review
- monitor heart rate and blood pressure before and after each dose change and routinely every 3 months
- monitor side-effects and report any concerns to specialist.
Routine blood tests and electrocardiograms for people taking methylphenidate, atomoxetine, or dexamfetamine are not recommended unless there is a clinical indication.
The most common short-term side-effects for psychostimulants are difficulty sleeping or appetite suppression, but these usually diminish after a few weeks and can be modified with adjustments in dosage and timing. Children with appetite suppression can be advised to eat a good breakfast and then additional meals or healthy snacks when stimulant effects have worn off.
Successful management of individuals with ADHD is critically dependent on shared-care arrangements and good communication between primary and secondary care. There is a need for integration of ADHD services to achieve the best outcomes through collaboration between primary care, ADHD specialist care, education services, social care, the youth justice system, and healthcare commissioners. Service provision needs to acknowledge the complexities of the disorder, its treatment requirements, and the cost of unmanaged ADHD to affected individuals and society as a whole. Urgent development of adult services across the UK is a priority along with effective transition into adult services for young people with persistent symptoms.
Further resources for parents, children, and adults are available at the following websites:
- Early identification and effective management of ADHD can significantly improve the ability to function normally
- Further training by ADHD specialist teams for primary care and education professionals would improve diagnosis and management
- ADHD is under diagnosed and there is increasing awareness of adults with ADHD who have been affected by impairments throughout their lives
- The biggest risk factor for developing ADHD is a positive family history
- Development of antisocial behaviours, particularly early onset of conduct disorder symptoms, learning problems, and environmental adversity, can lead adolescents to become young offenders
- Parents and carers should be supported to optimise parenting skills to achieve the above-average parenting needs of children and young people with ADHD
- Primary care professionals can offer support and advice to patients with suspected ADHD and their parents or carers before diagnosis
- The diagnosis of ADHD and any initiation of drug therapy, should be made by a specialist in secondary care
- Drug treatment for ADHD should:
- only be initiated by a healthcare professional expert in ADHD following comprehensive assessment and diagnosis
- be reviewed at least annually: prescribing and monitoring are recommended under shared-care arrangements.
ADHD=attention deficit hyperactivity disorder
GP commissioning messages
written by Dr David Jenner, GP, Cullompton, Devon
- ADHD has complex presentations and one of the key roles for GPs is the recognition of symptoms and referral to specialist care for definitive diagnosis
- Commissioners should lay out a clear diagnostic pathway so that GPs and other professionals (e.g. school nurses) can make prompt referrals and garner information and reports from key agencies to inform the referral
- Some cases of ADHD will require drug treatment, and commissioners should agree shared-care protocols for the prescribing and monitoring of these medicines between primary and secondary care
- Commissioners should also define clear pathways for transitioning of patients between children's and adult services, ensuring there is no relaxation in standards of care during this transition.
ADHD=attention deficit hyperactivity disorder
Read the Guidelines summary of CG72 on Attention deficit hyperactivity disorder: diagnosis and management for more advice on identifying and managing ADHD
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- Thomas R, Mitchell G, Batstra L. Attention-deficit/hyperactivity disorder: are we helping or harming? BMJ 2013; 347: f6172.
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- Ginsberg Y, Quintero J, Anand E et al. Underdiagnosis of attention-deficit/hyperactivity disorder in adult patients: a review of the literature. Prim Care Companion CNS Disord 2014; 16 (3): PCC.13r01600
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- American Psychiatric Association. Diagnostic and statistical manual of mental disorders, Fifth Edition. 2013.
- Cortese S. The neurobiology and genetics of attention-deficit/hyperactivity disorder (ADHD): what every clinician should know. Eur J Paediatr Neurol 2012; 16 (5): 422–433.
- Banerjee T, Middleton F, Faraone S. Environmental risk factors for attention-deficit hyperactivity disorder. Acta Paediatr 2007; 96 (9): 1269–1274.
- 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.
- Murray-Close D, Hoza B, Hinshaw S et al. Developmental processes in peer problems of children with attention-deficit/ hyperactivity disorder in the Multimodal Treatment Study of Children With ADHD: developmental cascades and vicious cycles. Dev Psychopathol 2010; 22 (4): 785–802.
- Hjern A, Weitoft G, Lindblad F. Social adversity predicts ADHD-medication in school children—a national cohort study. Acta Paediatr 2010; 99: 920–924.
- Young S, Thornr J. ADHD and offenders. World J Biol Psychiatry 2011; 12 Suppl 1: 124–128.
- Cussen A, Sciberras E, Ukoumunne O et al. Relationship between symptoms of attention-deficit/hyperactivity disorder and family functioning: a community-based study. Eur J Pediatr 2012; 171: 271–280. G