Abstract
Background
National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children’s services.
Methods
Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with fifteen paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care.
Results
Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children’s services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process.
Conclusions
These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.

AbstractBackgroundAttention deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterized by inattention, hyperactivity and/or impulsivity. Young people with ADHD have poorer educational and social outcomes than their peers. We aimed to better understand educational experiences of young people with ADHD in the UK, and make actionable recommendations for schools.MethodsIn this secondary analysis of qualitative data, we used Thematic Analysis to analyse information relating to experiences of education from 64 young people with ADHD and 28 parents who participated in the Children and adolescents with ADHD in Transition between Children's services and adult Services (CATCh‐uS) study. Emerging patterns within and across codes led to organization of the data into themes and subthemes through an iterative process.ResultsTwo main themes were generated. The first described young people's early experiences of education, often within a mainstream setting; we labelled this the problematic provision loop, as this was a negative cycle that was repeated several times for some participants. The second theme described young people's more positive progression through education once they progressed out of the problematic loop.ConclusionsEducational experiences for young people with ADHD are often negative and fraught with complication. Young people with ADHD often found themselves on a more positive trajectory after they were placed in an alternative form of education provision (mainstream or otherwise), or where they were able to study topics that interest them and play to their strengths. We make recommendations that commissioners, local authorities and schools could consider in order to better support those with ADHD.

AbstractAimTo inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention‐deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old.MethodUsing framework thematic analysis, we analysed data collected from 28 semi‐structured interviews with parents of young people with ADHD to generate a typology and triangulated it against findings from 64 interviews with young people with ADHD. The interviews were carried out as part of a three‐strand, interactive mixed‐method study.ResultsAn entourage typology of three parent roles was identified. Parents moved between ‘manager’ and ‘roadie’ roles as their child gradually matured. A ‘superfan’ role was identified which supported young people's positive self‐image but may impede withdrawal from the ‘manager’ role. Continued parental involvement into adulthood reflected a need to maintain the balance of resources required to maintain quality of life for the whole family.InterpretationThis is the first study to explore parental roles in the health care of young people with ADHD. Parents will vary in their capacity to fulfil the identified roles and step back their care as their children reach adulthood. The findings can inform intervention development to support families and transition between services.What this paper adds

Parents move from a ‘manager’ to ‘roadie’ role as young people mature.
A ‘superfan’ role supports positive self‐image and directed health care work.
Continued involvement reflects parental responsibility to juggle wider family needs and resources.
Parents differ in capacity to fulfil and move between these roles.

AbstractBackgroundAttention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication.MethodsQualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh‐uS) project was analysed to look for reasons for stopping medication. Semi‐structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re‐entered adult services later (n = 21).ResultsReasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services.ConclusionsA multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long‐term prospects and quality of life for these young people. Possible approaches include access to non‐pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions.

BACKGROUND: the UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involvement from young person and carer, completed by age 18. METHODS: a UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach. RESULTS: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide". CONCLUSIONS: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines.

. Background
. UK clinical guidelines recommend treatment of attention-deficit hyperactivity disorder (ADHD) in adults by suitably qualified clinical teams. However, young people with ADHD attempting the transition from children's to adults’ services experience considerable difficulties in accessing care.
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. Aims
. To map the mental health services in the UK for adults who have ADHD and compare the reports of key stakeholders (people with ADHD and their carers, health workers, service commissioners).
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. Method
. A survey about the existence and extent of service provision for adults with ADHD was distributed online and via national organisations (e.g. Royal College of Psychiatrists, the ADHD Foundation). Freedom of information requests were sent to commissioners. Descriptive analysis was used to compare reports from the different stakeholders.
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. Results
. A total of 294 unique services were identified by 2686 respondents. of these, 44 (15%) were dedicated adult ADHD services and 99 (34%) were generic adult mental health services. Only 12 dedicated services (27%) provided the full range of treatments recommended by the National Institute for Health and Care Excellence. Only half of the dedicated services (55%) and a minority of other services (7%) were reported by all stakeholder groups (P < 0.001, Fisher's exact test).
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. Conclusions
. There is geographical variation in the provision of NHS services for adults with ADHD across the UK, as well as limited availability of treatments in the available services. Differences between stakeholder reports raise questions about equitable access. With increasing numbers of young people with ADHD graduating from children's services, developing evidence-based accessible models of care for adults with ADHD remains an urgent policy and commissioning priority.
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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.

ADHD 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.

BACKGROUND: Health services have not provided adequate support for young people with long term health conditions to transfer from child to adult services. National Institute of Health and Care (NICE) guidance on transition has been issued to address these gaps. However, data are often sparse about the number of young adults who might need to transition. Using Attention Deficit Hyperactivity Disorder (ADHD) as an exemplar, this study used an existing surveillance system and a case note review to capture the incidence of the transition process, and compared and contrasted the findings. METHODS: the Child and Adolescent Psychiatry Surveillance System (CAPSS) was used to estimate the incident transition of young people with Attention Deficit Hyperactivity Disorder (ADHD) from child to adult services. This involves consultant child and adolescent psychiatrists from the United Kingdom (UK) and Republic of Ireland (ROI) reporting relevant young people as they are seen in clinics. In parallel, a case note review was conducted using the Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS). The study period ran for twelve months with a nine month follow up to see how the transition proceeded. RESULTS: CRIS identified 76 cases in the study period, compared to 18 identified using surveillance via CAPSS. Methodological issues were experienced using both methods. Surveillance issues; eligibility criteria confusion, reporting errors, incomplete questionnaires, difficulties contacting clinicians, and surveillance systems do not cover non-doctors and psychiatrists who are not consultants. Case note review issues using CRIS included the need for researchers to interpret clinical notes, the availability and completeness of data in the notes, and data limited to the catchment of one particular mental health trust. CONCLUSIONS: Both methods demonstrate strengths and weaknesses; the combination of both methods in the absence of strong routinely collected data, allowed a more robust estimate of the level of need for service planning and commissioning.

BACKGROUND: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. METHODS: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. RESULTS: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. CONCLUSIONS: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

Background: in recent years, the difficulty for young people with mental health issues who require a transition to adult services has been highlighted by several studies. In March 2018 the National Institute of Health and Care Excellence (NICE) produced detailed guidelines for the diagnosis and management of attention deficit hyperactivity disorder (ADHD), updated from previous versions in 2008 and 2016, which included general recommendations for transition to an adult service. Yet, there is limited research on transition specifically for those with ADHD. This review aims to systematically identify, review and compare guidelines, specifically focussed on transition for young adults with ADHD within England. Methods: Following the general principles for systematic reviewing as published by the University of York, 10 electronic databases were searched. Further documents were identified through searches of grey literature and additional sources. Results: Sixteen documents were included. Results indicate very limited publically accessible guidelines in England for transition of young people with ADHD. Nearly all identified documents based their recommendations for transition on the existing NICE guidelines. Neurodevelopmental conditions such as ADHD are often encompassed within one overarching health policy rather than an individual policy for each condition. Conclusions: Guidelines should be available and accessible to the public in order to inform those experiencing transition; adjusting the guidelines to local service context could also be beneficial and would adhere to the NICE recommendations. Further review could examine transition guideline policies for mental health in general to help identify and improve current practice.

BACKGROUND: ADHD affects some individuals throughout their lifespan, yet service provision for adults in the United Kingdom (UK) is patchy. Current methods for mapping health service provision are resource intensive, do not map specialist ADHD teams separately from generic mental health services, and often fail to triangulate government data with accounts from service users and clinicians. Without a national audit that maps adult ADHD provision, it is difficult to quantify current gaps in provision and make the case for change. This paper describes the development of a seven step approach to map adult ADHD service provision in the UK. METHODS: a mapping method was piloted in 2016 and run definitively in 2018. A seven step method was developed: 1. Defining the target service 2. Identifying key informants 3. Designing the survey 4. Data collection 5. Data analysis 6. Communicating findings 7. Hosting/updating the service map. Patients and members of the public (including clinicians and commissioners) were involved with design, data collection and dissemination of findings. RESULTS: Using a broad definition of adult ADHD services resulted in an inclusive list of identified services, and allowed the definition to be narrowed to National Health Service (NHS) funded specialist ADHD services at data analysis, with confidence that few relevant services would be missed. Key informants included patients, carers, a range of health workers, and commissioners. A brief online survey, written using lay terms, appeared acceptable to informants. Emails sent using national organisations' mailing lists were the most effective way to access informants on a large scale. Adaptations to the methodology in 2018 were associated with 64% more responses (2371 vs 1446) collected in 83% less time (5 vs 30 weeks) than the pilot. The 2016 map of adult ADHD services was viewed 13,688 times in 17 weeks, indicating effective communication of findings. CONCLUSION: This seven step pragmatic method was effective for collating and communicating national service data about UK adult ADHD service provision. Patient and public involvement and engagement from partner organisations was crucial throughout. Lessons learned may be transferable to mapping service provision for other health conditions and in other locations.

Background: Recruitment and retention of participants is crucial for statistical power and internal and external validity and participant engagement is essential for behaviour change. However, many school-based interventions focus on programme content rather than the building of supportive relationships with all participants and tend to employ specific standalone strategies, such as incentives, to improve retention. We believe that actively involving stakeholders in both intervention and trial design improves recruitment and retention and increases the chances of creating an effective intervention. Methods: the Healthy Lifestyles Programme, HeLP (an obesity prevention programme for children 9-10 years old) was developed using intervention mapping and involved extensive stakeholder involvement in both the design of the trial and the intervention to ensure that: (i) delivery methods were suitably engaging, (ii) deliverers had the necessary skills and qualities to build relationships and (iii) the intervention dovetailed with the National Curriculum. HeLP was a year-long intervention consisting of 4 multi-component phases using a range of delivery methods. We recruited 1324 children from 32 schools from the South West of England to a cluster-randomised controlled trial to determine the effectiveness of HeLP in preventing obesity. The primary outcome was change in body mass index standard deviation score (BMI SDS) at 24 months post randomisation. Secondary outcomes included additional anthropometric and behavioural (physical activity and diet) measures at 18 and 24 months. Results: Anthropometric and behavioural measures were taken in 99%, 96% and 94% of children at baseline, 18 and 24 months, respectively, with no differential follow up between the control and intervention groups at each time point. All children participated in the programme and 92% of children and 77% of parents across the socio-economic spectrum were considered to have actively engaged with HeLP. Conclusions: We attribute our excellent retention and engagement results to the high level of stakeholder involvement in both trial and intervention design, the building of relationships using appropriate personnel and creative delivery methods that are accessible to children and their families across the social spectrum.