Objectives To identify the ongoing service needs of young people with attention-deficit hyperactivity disorder (ADHD).
Design A case note review of all children aged 14 and over with a diagnosis of ADHD seen in a paediatric neurodisability clinic.
Participants 139 young people aged 14 years and over on 1 September 2007 with a diagnosis of ADHD were identified from ADHD service user databases at a centre in Sheffield, UK.
Results 102 young people were on medication for ADHD and just over 50% had well controlled ADHD. 71% had at least one co-morbid condition. 46 patients had had intervention from child and adolescent mental health services and 17% had offended. 37% were likely to need transition to adult mental health services as soon as they left paediatric services and 36% would benefit from the expertise of a clinical nurse specialist, either to support a general practitioner (GP) or adult mental health professionals.
Conclusions The recent National Institute for Health and Clinical Excellence guidelines highlight the need to provide transition services for young people with ADHD who have continuing impairment. The need for services for adults with ADHD is also recognised. The study confirms and refines the nature of this need in the local population. Young people with mental health problems in addition to their ADHD will need support from adult mental health services. However, a significant group of young adults are likely to be managed well by specialist nurses working with GPs in a primary care setting or adult mental health.
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In recent years attention-deficit hyperactivity disorder (ADHD) has been increasingly recognised in the UK and diagnosis in childhood has risen.1 As a result, many children and young people now receive support, which benefits them and their families. ADHD symptoms follow a developmental decline paralleling the normal changes in levels of inattentive, hyperactive and impulsive behaviours seen with increasing age. Studies have shown that as young people with ADHD move into adulthood prevalence for strictly applied operational definitions of ADHD declines.2 3
A recent review of longitudinal follow-up studies found that only 15% of children diagnosed with ADHD retained the full diagnosis by age 25.2 However, a much larger proportion (65%) fulfilled the Diagnostic and Statistical Manual of Mental Disorders criteria for ADHD in partial remission, indicating the persistence of some symptoms associated with significant clinical impairments.2 Applying these figures to the prevalence range commonly seen in children of 4–8% gives an expected incidence of 0.6–1.2% of adults retaining the full diagnosis by age 25 and 2–4% with ADHD in partial remission. This is consistent with population surveys in adult populations that estimate the prevalence of ADHD in adults to be 3–4%.3 4 These figures suggest there are a significant number of adults requiring appropriate services to manage their ADHD.
What is already known on this topic
▶. Many young people now receive support following a diagnosis of attention-deficit hyperactivity disorder (ADHD) and there is evidence to suggest symptoms of ADHD can continue into adult life.
▶. Recent NICE guidelines recommend services for adults with ADHD should be available across the country.
What this study adds
▶. At transition to adult services, young people with ADHD often have ongoing symptoms needing medication and co-morbid conditions; they are at increased risk of committing criminal offences.
▶. These young people need continuing support in adulthood which could be provided by trained professionals including general practitioners, adult mental health teams and specialist ADHD nurses.
Young people with chronic health conditions, including ADHD, benefit from a planned period of specialist transition care to facilitate the move from paediatric to adult services. This should encompass the medical, psychosocial and educational/vocational needs of adolescents and young adults.5 Input should be increasingly directed to the young person, involving them in informed choices about the services they use.6 The same guidelines recognise young people with mental health needs as being particularly vulnerable.6 Well planned transition can improve outcomes for young people and reduce the risk of non-adherence and loss to follow-up.7
Recent National Institute for Health and Clinical Excellence (NICE) guidelines1 include recommendations for the assessment and treatment of ADHD in adult life. NICE have identified three groups of adults with ADHD with different needs:
Currently treated adults (diagnosis made in childhood with ongoing symptoms) who can be further divided into those stably maintained on medication with or without the need for psychological treatment and those not stably maintained on medication who require further titration of pharmacological treatments and/or psychological treatment or management of co-existing disorders.
Diagnosed with ADHD in childhood but currently untreated despite ongoing symptoms and impairment. Often these individuals were lost to follow-up from children's services.
Diagnosis of ADHD not made in childhood but the individual has recognisable symptoms and impairment as an adult. This group will include some parents of children seen in children's services.
With these groups in mind, NICE1 recommended three types of service:
Drug monitoring services – these can be provided by a number of suitably trained specialist professionals including adult psychiatrists, nurse practitioners and primary care physicians. Shared care protocols should be established with primary care taking responsibility for routine prescribing and health checks (pulse, blood pressure and weight), and specialist services monitoring the dose and continued need for treatment.
Psychological services – these should include psychoeducation, anger management, daily living skills, treatment of co-morbid anxiety or depression, counselling, ADHD coaching, community healthcare and occupational care. Current provision of this type is rare in the UK.
Diagnostic services – these should be available for assessment and re-assessment for all three groups of adults with ADHD. The diagnosis of ADHD should be made by a specialist adult psychiatrist, who can take account of the full range of mental health problems. Where medication is indicated, diagnostic services should initiate and monitor treatment during the titration phase. Prescribing can be later devolved to the primary care physician using a shared care protocol.
Services for adults with ADHD are developing in several regions of the UK and in a few are highly developed. They usually consist of services for young people leaving paediatric services and/or new diagnostic services in adult mental health. Arrangements for the transition of care from child to adult mental health services should be available in all regions.
In light of government documentation including recent NICE guidelines1 and with adult ADHD services developing across the country, we wanted to identify the potential needs of young adult service users graduating from paediatric services and suitable models of care for adult provision. We, therefore, gathered information about ongoing care needs for young people with ADHD known to paediatric neurodisability services in Sheffield.
All children aged 14 years and over on 1 September 2007 seen in our paediatric neurodisability service with a diagnosis of ADHD were included in the study. Children were identified from a clinical database. Ethics approval for this study was not necessary.
Case notes were analysed to gather information on the age of the children, length of time seen at the centre (for any diagnosis), co-existing conditions, current medication and associated side effects, contact with child and adolescent mental health services (CAMHS), school or employment and known criminal activity. These variables were considered to be important in assessing the impact of ADHD and were used with a general impression of each patient to determine a Clinical Global Impression (CGI) severity score. The CGI score measures the impact of ADHD on the young person's life and can range from 1 to 7 (table 1). The CGI score was used, alongside previous support needs and relevant co-morbidities, to determine the most appropriate model of ongoing care (table 2).
A total of 147 young people aged 14 years and over were on our database on 1 September 2007 (54 aged 14, 35 aged 15, and 58 aged 16+). Eight young people were excluded as a case note review demonstrated that a firm diagnosis was not established. Therefore, 139 young people were included in the study. Mean age was 15 years 11 months (range 14 years 0 months to 19 years 10 months) and 130 (94%) were male.
Around 25% of the 14- and 15-year olds in this population attended special needs education, including schools for general learning disabilities, autism or emotional and behavioural problems, residential special needs schools and home schooling. The remaining 75% were in mainstream schools (children with less than moderate learning difficulties attend mainstream schools in Sheffield). Another child had a statement for special educational needs in mainstream school.
The young people aged 16 and above had a wider range of education and employment situations and slightly under one third were attending mainstream school (figure 1).
A total of 102 young people were taking regular medication (table 3) (92% of the 14- and 15-year olds and 46% of the over-16 group). The majority were on methylphenidate and the formulation of this was chosen on the basis of the young person's individual needs. Also, 13% were prescribed melatonin to assist with sleep problems.
Reported side effects
Just over a third of children on medication (39%) reported some side effects, the most frequent being loss of appetite (n=14), weight loss (n=13) and poor sleep (n=12). There were also a number of less common side effects including mildly raised blood pressure, low mood, tiredness, tics, indigestion, nausea, abdominal pain, chest pain and problems with body image (including obesity).
CGI scores were given for both home and school (table 4). Overall, 52% of the 14- and 15-year olds and 54% of the 16+ year olds scored 1 or 2, which we would consider to mean they had well controlled ADHD.
A significant number of children (71%) had co-morbid conditions (table 5) A large proportion of these were developmental difficulties which may reflect our service specialism.
Of the 139 young people, 46 (33%) had received CAMHS involvement at some stage. For a significant number of these young people CAMHS were involved before they were referred to neurodevelopmental services, but for other children there were a variety of reasons for CAMHS referrals including severe behavioural problems, low mood, emotional difficulties, self-harm, anger management and complex family problems.
A criminal offence had been committed by 17%. Offences included fire setting, theft, antisocial behaviour, drug use, sexual assault, criminal damage, and being drunk and disorderly. All the children in our study who offended were male.
Possible ongoing care
Traditionally, transfer from children's to adult services has taken place at the age of 16. Discussion is currently ongoing as to whether this should be increased to 18 for young people with mental health and developmental difficulties. This review demonstrates that a significant number of young people still have symptoms of ADHD which cause impairment and will benefit from ongoing support including psychological therapies and medication. In the UK adult services are not yet fully established and there is an urgent need to rectify this. The increased diagnosis of ADHD in childhood in the UK means that a cohort of young people known to have ADHD are now ready to move into adult services. There is also recognition that a group of adults with significant impairment as a result of ADHD either were never diagnosed in childhood or were lost to follow-up from children's services. A recent cohort study following children with such behaviour over the last 40 years shows that this cohort had a significantly increased risk of mental health problems in adulthood.8 The NICE guideline1 provides strong evidence for the provision of services for adults with ADHD.
This study looks at the ongoing needs of the young people known to a developmental paediatric service. We were encouraged to find that approximately 50% of these young people have good symptom control and therefore do not need the involvement of oversubscribed adult mental health teams. It was felt that 29% of young people could be monitored by the general practitioner (GP) alone. Around half of these young people (n=22) currently require ongoing medication. GPs may require initial support from a specialist nurse and further training in ADHD management to enable them feel competent managing such patients. Access back to specialist services needs to be available. A quarter (n=11) of patients in this group were discharged as they were non-compliant with medication and/or follow-up care and this group in particular may need access back to services at their request.
In our paediatric ADHD service we have benefited from the role of specialist nurses. We feel there is a role for specialist nurses, ideally nurse prescribers, in supporting young people with ADHD; specialist nurses in our assessment could have taken the clinical lead role in working with a further 29% of our group of young people. These young people will have more complex needs than those monitored solely by the GP but not severe enough requirements for adult mental health services. Such a nurse could support young people and their families to facilitate transition and then play a pivotal role in ongoing support, providing a skilled bridge between GPs and adult mental health teams.
In our study, 36% of the young people seem likely to need ongoing support from adult mental health services (including learning disability support). These young people are those with ongoing mental health needs, for example, depression, anxiety and Asperger's syndrome. A number of current adult mental health clients may have ADHD, recognised or not, and there is clearly a need for assessment/reassessment services for adults within adult mental health teams. For some young people, there may be a useful role for student or occupational health services.
Comparing the level of co-morbidity in our sample with larger population studies of ADHD,9,–,11 our sample had similar levels of learning difficulties but much lower levels of conduct disorder, oppositional defiant disorder, mood disorders, tics and anxiety disorders. Some of these conditions may be underdiagnosed within paediatric developmental services. In Sheffield, CAMHS also provide services for children with ADHD. We were not able to include those children in our study. It is likely that young people with psychiatric co-morbidities which are less prevalent within our service are included in the population of patients seen within CAMHS. Therefore, young people graduating from CAMHS services may have different needs and while it is likely that a specialist ADHD nurse and/or GPs could take on a proportion of these patients, there may be larger numbers requiring adult mental health support.
It is recognised that the period in which transition occurs is a time when young people are vulnerable to dropping out of services.7 In our practice we have found this to be true for young people with ADHD. A proportion of young people leave paediatric services, either because they do not have significant impairment at that point, or from lack of involvement with services. As they meet more complex issues, some will wish to access an adult service, for example after leaving the family home to go to university or employment, or following involvement with the Criminal Justice System. There needs to be a clear point of access into adult services to avoid disillusionment and increased impairment which could affect that individual and the next generation.
Offending behaviour, usually of an impulsive nature, was exhibited by 17% of this sample of young people. In general, young people with ADHD are at risk of offending. A recent review and meta-analysis of 13 studies found a pooled prevalence of 11.7% of boys and 18.5% of girls in young offenders' institutions with a diagnosis of ADHD. This review also found that the risk of ADHD was two to four times greater in young offenders than in the general population of an equivalent age.12 Timely input from preventive resources may reduce the risk of offending and re-offending. Specialist support, for example, from forensic and probation teams, may also be needed. It is known that there are many young people and adults within our prison population who have a diagnosis of ADHD, whether recognised or not.12 Vigilance is required among prison officers, forensic psychiatry and prison in-reach services in both juvenile and adult penal institutions in order to address this issue. This may also help to reduce levels of re-offending by offering appropriate management and services for those individuals.
Young people with chronic health conditions need appropriate transitional care and adult services. The government highlighted young people with mental health problems as being a particularly vulnerable group with regard to transition.7 Comparable to other medical conditions, young people with ADHD need an individual plan for the transition period which would encompass ongoing psychosocial and education/employment needs in addition to medical care. ADHD has a wide spectrum of severity and unlike many other chronic medical conditions, clinical management and follow-up do not fit a readily defined protocol. While models of transition care that are used in other specialties (eg, combined transition clinics) may benefit some young people with ADHD, we show that this would not be optimal for all young people given the wide range of severity and need. There have been a few examples of transition clinics for young people with ADHD, but these have been in a mental health setting with much smaller numbers of patients.13 We suggest there should be a number of options for follow-up depending on levels of need and that these should be linked together flexibly to enable young people and adults to move between the levels of care as their needs change.
Within this study we were not able to assess in detail the full needs of young people as they move from paediatric to adult services. It would be important to build upon our findings with more research around what the young people and their families find supports this transition and into the specific needs of adolescents with ADHD (eg, advice regarding sexual health, risk-taking behaviours, employment, etc). There is also a need for research into possible self-support packages, group work and individual coaching services.
The 2008 NICE guidelines1 alongside other published research13 14 provide an evidence base for the need for services for adults with ADHD. Our review supports this need and considers appropriate models of care. Importantly, our figures suggest that while these services will place extra demands on stretched adult mental health teams, many young people can be well and even optimally supported by appropriately trained specialist nurses with close connections to primary care and adult mental health. The time is right for child and adult services to work together to establish effective care pathways to meet the needs of this important group of individuals.
Competing interests NT and AF have no competing interests. VH has received research funding from Shire and Eli Lilly pharmaceutical companies and has been a member on advisory boards for Eli Lilly, Jansen Cilag, Flynn and UCB pharmaceutical companies.
Provenance and peer review Not commissioned; externally peer reviewed.
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