Service use and unmet mental health need in children and young adults: analysis of three years of follow up from the 2004 British Child and Adolescent Mental Health Survey & description of primary care psychotropic prescribing & transition in young adults with Attention Deficit Hyperactivity Disorder

This thesis aimed to examine service contact among children and young people with mental health problems, and has three complementary parts. The first is a secondary analysis of data from the British Child and Adolescent Mental Health Survey (BCAMHS) 2004, which explored mental health related service contact in relation to psychopathology over three years. The second and third parts focussed on young people with ADHD in transition from child services, which is a particularly challenging time. This involved a qualitative interview study of young peoples’ experiences, and an analysis of primary care prescribing of ADHD medication over the transition period using a cohort from the Clinical Practice Research Datalink from 2005-2013. Less than a third of children with a psychiatric disorder in BCAMHS reported contact with child mental health services. Instead, teachers were the most frequently used service, with two-thirds reporting mental health related contact. Interviews with young people with ADHD highlighted themes including concerns around medication management post transition and need for information. The prescribing analysis found that the majority of adolescents on ADHD medication at age 16 stopped during the transition period. This continuing disparity between estimates of symptom persistence and medication persistence suggests that many may be stopping medication from which they could still benefit; as various barriers have been identified to ongoing prescribing. In summary, the findings of these three linked studies suggest common themes in terms of unmet needs and gaps between policy and practice in mental health services for children and young people. One of the chief implications is the need for oversight and policy levers to ensure the implementation of best practice, accompanied by complementary efforts to better understand and overcome other barriers to providing optimal care, including research into knowledge and attitudes of different groups and the provision of targeted training.NIHR Doctoral Research Fellowshi

Regional analysis of UK primary care prescribing and adult service referrals for young people with attention-deficit hyperactivity disorder.

BACKGROUND: Approximately 20% of children with attention-deficit hyperactivity disorder (ADHD) experience clinical levels of impairment into adulthood. In the UK, there is a sharp reduction in ADHD drug prescribing over the period of transition from child to adult services, which is higher than expected given estimates of ADHD persistence, and may be linked to difficulties in accessing adult services. Little is currently known about geographical variations in prescribing and how this may relate to service access. AIMS: To analyse geographic variations in primary care prescribing of ADHD medications over the transition period (age 16-19 years) and adult mental health service (AMHS) referrals, and illustrate their relationship with UK adult ADHD service locations. METHOD: Using a Clinical Practice Research Datalink cohort of people with an ADHD diagnosis aged 10-20 in 2005 (study period 2005-2013; n = 9390, 99% diagnosed <18 years), regional data on ADHD prescribing over the transition period and AMHS referrals, were mapped against adult ADHD services identified in a linked mapping study. RESULTS: Differences were found by region in the mean age at cessation of ADHD prescribing, range 15.8-17.4 years (P<0.001), as well as in referral rates to AMHSs, range 4-21% (P<0.001). There was no obvious relationship between service provision and prescribing variation. CONCLUSIONS: Clear regional differences were found in primary care prescribing over the transition period and in referrals to AMHSs. Taken together with service mapping, this suggests inequitable provision and is important information for those who commission and deliver services for adults with ADHD

Mental health related contact with education professionals in the British Child and Adolescent Mental Health Survey 2004

Purpose – The purpose of this paper is to describe mental health-related contact with educational professionals amongst children in the British Child and Adolescent Mental Health Survey (BCAMHS) 2004. Design/methodology/approach – BCAMHS 2004 was a community-based survey of 5,325 children aged 5-16, with follow-up in 2007. This paper reports the percentage of children with a psychiatric disorder that had mental health-related contact with education professionals (categorised as teachers or specialist education services) and the percentage with specific types of psychiatric disorders amongst those contacting services. Findings – Two-thirds (66.1 per cent, 95 per cent CI: 62.4-69.8 per cent) of children with a psychiatric disorder had contact with a teacher regarding their mental health and 31.1 per cent (95 per cent CI: 27.5-34.7 per cent) had contact with special education either in 2004 or 2007, or both. Over half of children reporting special education contact (55.1 per cent, 95 per cent CI: 50.0-60.2 per cent) and almost a third reporting teacher contact in relation to mental health (32.1 per cent, 95 per cent CI: 29.7-34.6 per cent) met criteria for a psychiatric disorder. Practical implications – Many children in contact with education professionals regarding mental health experienced clinical levels of difficulty. Training is needed to ensure that contact leads to prompt intervention and referral if necessary. Originality/value – This is the first paper to report on mental health-related service contact with education professionals in the 2004 BCAMHS survey along with its 2007 follow-up. It identifies high levels of teacher contact which represent challenges in supporting staff with training, resources and access to mental health services.National Institute for Health Research - Doctoral Research FellowshipNational Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula at Royal Devon and Exeter NHS Foundation Trus

Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK

Abstract: Background: Many young people with Attention Deficit Hyperactivity Disorder (ADHD) have impairing symptoms that persist into adulthood, yet only a minority experience continuity of care into adult life. Despite growing emphasis on the primary care role in ADHD management in NICE ADHD and transition guidance, little is known about GPs’ perspectives, which could hamper efforts to improve outcomes for young people leaving children’s services. This study aimed to understand GPs’ experiences of involvement with this group and explore their views on the roles and responsibilities of primary and secondary care in transition, to inform recommendations for policy and practice. Method: Qualitative interview study with GPs across the UK. Semi-structured telephone interviews were carried out with 14 GPs recruited through a linked mapping study, social media, and snowballing; data were analysed using thematic analysis. Results: In the absence of a smooth transition from child to adult services, many GPs became involved ‘by default’. GPs reacted by trying to identify suitable specialist services, and were faced with the decision of whether to continue ADHD prescribing. Such decisions were strongly influenced by perceptions that prescribing carried risks, and concerns over responsibility, particularly where specialist services were lacking. Participants described variation in service availability, and some highlighted tensions around how shared care works in practice. Conclusion: Implementation of NICE guidance is highly variable, with implications for GPs and patients. Risk and responsibility for primary care ADHD prescribing are central concerns that need to be addressed, as is the inclusion of GPs in a planned transition process

Teachers' concerns about pupils' mental health in a cross-sectional survey of a population sample of British schoolchildren.

BACKGROUND: Schools are becoming central to the identification and referral of children and young people with poor mental health. Understanding how well a teacher concern predicts mental disorder in a child or young person is important for mental health teams who need to respond to referrals. METHOD: This secondary analysis of the 2004 British Child and Adolescent Mental Health Survey used the first item of the Strengths and Difficulties Questionnaire (SDQ) Impact subscale to indicate concern about a child or young person's mental health. Mental disorder according to DSM IVR criteria was assessed using the multi-informant Development and Well-Being Assessment. We compared the proportion with and without mental disorder according to the presence or absence of teacher concern. RESULTS: Teacher concern was moderately predictive (49% with teacher concern had a disorder) and sensitive (teacher concern present among 56% with disorder), while lack of teacher concern was highly predictive (only 5% had disorder) and specific (94% no disorder). Teacher concern was associated with significantly poorer mental health (mean teacher SDQ total difficulty score 19.6, SD 5.6 with disorder, mean 15.0; SD 5.1 if no disorder) compared to children without teacher concern (mean 9.6, SD 5.5 with disorder, and 4.9; SD 4.3 if no disorder; F (3, 5,931) = 1527.228, p = .001). If both teacher and parents were concerned, the child or young person was much more likely to have a disorder. CONCLUSION: A lack of teacher concern can reassure mental health practitioners in the vast majority of cases. While teacher concern does identify those with poorer mental health, it is only moderately predictive of a disorder. When concerned about a child or young person, discussions with parents or others who know them may help teachers identify those who most need support. KEY PRACTITIONER MESSAGE: The emphasis on schools as a major setting to provide support and identify the need for referral to specialist mental health services means service commissioners, providers and practitioners could benefit from insight into how predictive a teacher's concern is of childhood mental health conditions and how this may vary with the type of disorder If teachers are not concerned about a child, practitioners can be reassured that there is unlikely to be a significant problem with their mental health, although this will be less certain in schools whose pupils are likely to have a higher than average levels of difficulty Teacher concerns do not necessarily differentiate between clinically impairing and mild/ moderate mental health difficulties, but do identify children in poorer mental health Asking for corroboration of concern from other sources increases the strength of the association to severe mental health disorders.Place2be Governments of England, Scotland, Wale

Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study

Background Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on these transitions. Aims To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. Method Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. Results Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. Conclusions As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences

Time trends in autism diagnosis over 20 years: a UK population-based cohort study.

BACKGROUND: Autism spectrum disorder is a diagnosis that is increasingly applied; however, previous studies have conflicting findings whether rates of diagnosis rates continue to grow in the UK. This study tested whether the proportion of people receiving a new autism diagnosis has been increasing over a twenty-year period, both overall and by subgroups. METHOD: Population-based study utilizing the Clinical Practice Research Datalink (CPRD) primary care database, which contains patients registered with practices contributing data to the CPRD between 1998 and 2018 (N = 6,786,212 in 1998 to N = 9,594,598 in 2018). 65,665 patients had a diagnosis of autism recorded in 2018. Time trend of new (incident) cases of autism diagnosis was plotted for all, and stratified by gender, diagnostic subtypes, and developmental stage: infancy and preschool, 0-5 years old; childhood, 6-11 years old; adolescence, 12-19 years old; adults, over 19 years old. RESULTS: There was a 787%, exponential increase in recorded incidence of autism diagnoses between 1998 and 2018; R2  = 0.98, exponentiated coefficient = 1.07, 95% CI [1.06, 1.08], p < .001. The increase in diagnoses was greater for females than males (exponentiated interaction coefficient = 1.02, 95% CI [1.01, 1.03], p < .001) and moderated by age band, with the greatest rises in diagnostic incidence among adults (exponentiated interaction coefficient = 1.06, 95% CI [1.04, 1.07], p < .001). CONCLUSIONS: Increases could be due to growth in prevalence or, more likely, increased reporting and application of diagnosis. Rising diagnosis among adults, females and higher functioning individuals suggest augmented recognition underpins these changes

Childhood/adolescent Sydenham’s chorea in the UK and Ireland: a BPSU/CAPSS surveillance study

Objective: To conduct the first prospective surveillance study of Sydenham’s chorea (SC) in the UK and Ireland, and to describe the current paediatric and child psychiatric service-related incidence, presentation and management of SC in children and young people aged 0–16 years. Design: Surveillance study of first presentations of SC reported by paediatricians via the British Paediatric Surveillance Unit (BPSU) and all presentations of SC reported by child and adolescent psychiatrists through the Child and Adolescent Psychiatry Surveillance System (CAPSS). Results: Over 24 months from November 2018, 72 reports were made via BPSU, of which 43 met the surveillance case definition of being eligible cases of suspected or confirmed SC. This translates to an estimated paediatric service-related incidence rate of new SC cases of 0.16 per 100 000 children aged 0–16 per year in the UK. No reports were made via CAPSS over the 18-month reporting period, although over 75% of BPSU cases presented with emotional and/or behavioural symptoms. Almost all cases were prescribed courses of antibiotics of varying duration, and around a quarter of cases (22%) received immunomodulatory treatment. Conclusions: SC remains a rare condition in the UK and Ireland but has not disappeared. Our findings emphasise the impact that the condition can have on children’s functioning and confirm that paediatricians and child psychiatrists should remain vigilant to its presenting features, which commonly include emotional and behavioural symptoms. There is a further need for development of consensus around identification, diagnosis and management across child health settings

Primary care provision for young people with ADHD: A multi-perspective qualitative study

Background: Attention deficit hyperactivity disorder (ADHD) is a highly prevalent neurodevelopmental disorder. United Kingdom (UK) guidance states primary care has a vital role in effective ADHD management including referral, medication prescribing and monitoring, and providing broader mental health and wellbeing support. However, many general practitioners (GPs) feel unsupported to provide healthcare for young people with ADHD. Inadequate healthcare is associated with rising costs for patients and society. Aim: To investigate the experiences of young people with ADHD accessing primary care in England, from the perspectives of people with lived experience of ADHD (LE), and healthcare professionals (HPs). Design and Setting: Qualitative interviews were conducted with HPs (GPs, practice mangers, and a wellbeing worker), and people with LE (young people aged 16-25, and their supporters) located in Integrated Care Systems, across England. Method: Semi-structured interviews were conducted with participants at five purposively selected general practices (varying by: deprivation, ethnicity, rural-urban setting). Questions focused on experiences of accessing/providing healthcare for ADHD. Reflexive thematic analysis was undertaken within a critical realist framework, to understand how provision works in practice and explore potential improvements. Results: Twenty interviews were completed with 11 HPs and 9 people with LE. Three themes were generated: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change. Conclusion: Standardisation of ADHD management in primary care, providing better information and support for HPs, and advising on reasonable adjustments for people with LE could help improve access to effective treatments for young people living with ADHD

The transition from children's services to adult services for young people with attention deficit hyperactivity disorder : the CATCh-uS mixed-methods study

This is the final version. Available on open access from the NIHR Journals Library via the DOI in this recordADHD was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support ADHD patients who become too old for child services. This is the first in-depth study of the transition of ADHD patients from child to adult health services in the UK. Our objectives were to explore: o how many young people with ADHD are in need of services as an adult o what adult ADHD services are available o how ADHD stakeholders experience transition from child to adult services Design An interactive mixed method design was adopted with three study streams; (1) a twelve-month surveillance study with nine month follow-up to find out how many young people required ongoing medication when too old for child services (929 surveys completed by child clinicians); (2) a mapping study to identify and describe services for young adults with ADHD (2,686 respondents to online surveys for patients and health workers and Freedom of Information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholder experience of transition from child to adult services (144 interviews with 64 ADHD patients, 28 parents, 52 clinicians working in child or adult secondary health services and 14 general practitioners). Members of the public advised each stage of the study. Results Corrected for non-response and case ascertainment, the annual incidence of young people with an ongoing need for medication for ADHD lies between 270 and 599 per 100,000 people aged 17 – 19 years. Of 315 eligible cases for transition, 64% of referrals were accepted but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with ADHD across the UK; 44 were ‘dedicated’ ADHD services (defined chapter 4). Few services provide the full range of recommended provision, most focused on diagnosis and medication. They were unevenly distributed across the UK, with nearly all ‘dedicated’ services in England. Exploring stakeholders’ experiences revealed how invested they are in continuing ADHD treatment and the architecture of services impacted transition. An association between ADHD, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with ADHD, influenced investment. However, even if invested; how accessible adult services were; how patient needs fitted with the remit of the adult service; and the level of patient information available impacted transition outcomes. The results also highlighted how GPs can end up as care-coordinator during transition by default. Limitations Transition estimates were based on those who want medication, so indicate a minimum level of need. Conclusions Few of those who need ongoing support for their ADHD successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult ADHD service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of NICE recommended treatments. Future Work We a need to evaluate various models of transitional care and adult ADHD provision, as well as develop and evaluate psycho-social interventions for young people and adults with ADHD. Funding The National Institute for Health Research - Health Services and Delivery Research Programme.National Institute for Health Research (NIHR)Note the change of title. The title of the author accepted manuscript (and the original title of this record) was "Young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children's services to adult services (CATCh-uS): a mixed methods national scoping study