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

This is the final version. Available on open access from BMC via the DOI in this recordBackground 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 managementin 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, particularlywhere specialist services were lacking. Participants described variation inservice 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.National Institute for Health Research (NIHR)Health Education Englan

Prescribing of medication for attention deficit hyperactivity disorder among young people in the Clinical Practice Research Datalink 2005-2013: analysis of time to cessation

This is the author accepted manuscript. The final version is available from Springer Verlag via the DOI in this record.The aim of this study was to examine the time to cessation of ADHD medication amongst young people with ADHD aged 16 in the period 2005-2013. Previous studies of prescribing in primary care reported high rates of medication cessation amongst 16 and 17 year olds with ADHD. The examination of trends since the introduction of new NICE guidance in 2008 will support service planning and improvement of outcomes over the vulnerable transition period from child to adult services. We used primary care records from the Clinical Practice Research Datalink and identified cases prescribed ADHD medication at the time of their 16th birthday during the study period. The outcome was time to medication cessation from the age of 16. Cessation of medication was defined as occurring at the beginning of a gap of over 6 months in prescriptions. 1620 cases were included. The median time to cessation was 1.51 years (95% CI 1.42-1.67).The estimated probability of remaining on medication was 0.63 (95% CI 0.61-0.65) at age 17 (i.e., at 1 year) and 0.41 (95% CI 0.39-0.43) at age 18. Young people with ADHD remain at high risk of cessation of medication during the transition from child to adult services. Despite the restriction that only primary care prescribing data were available, the results suggest continuing disparity between expected levels of symptom persistence and continuation of medication.This research was funded as part of a Doctoral Research Fellowship from the National Institute for Health Research held by Tamsin Newlove-Delgado (Reference: DRF-2012-05-221). Tamsin Newlove-Delgado is currently funded by an NIHR Academic Clinical Lectureship. Ken Stein and Obioha C. Ukoumunne were funded by the National 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 Trust. This report is independent research and the views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health

Prescribing for young people with Attention Deficit Hyperactivity Disorder in UK primary care: analysis of data from the Clinical Practice Research Datalink

This is the author accepted manuscript. The final version is available from Springer via the DOI in this record.Background Guidance on management of Attention Deficit Hyperactivity Disorder [ADHD] in the UK was issued by the National Institute for Clinical Excellence [NICE] in 2008. No UK study has examined all psychotropic prescribing in young people with ADHD since the introduction of the guidance; this is especially relevant due to the high prevalence of psychiatric comorbidity in this population. Aim To describe primary care prescribing of ADHD and other psychotropic medication for young people with ADHD. Design and setting Analysis of records of patients with an ADHD diagnosis in the UK Clinical Practice Research Datalink from 2005 to 2013. Methods Estimation of the prevalence of prescribing of ADHD and other psychotropic medication over 8 years follow-up for cases aged 10 to 20 years in 2005. Results Of 9,390 ADHD cases, 61.6% (95% confidence interval (CI) = 60.6% to 62.5%) had a prescription at some point for ADHD medication. Prescribing of other psychotropic medication was higher in girls than boys (36.4% versus 22.7%; p<0.001). ADHD prescribing prevalence declined steeply between the ages of 16 and 18 from 37.8% (95% CI 36.6 to 38.9) to 23.7% (95% CI: 22.7 to 24.6%). There was a parallel increase in prescribing of other psychotropics from 3.8% (95% CI: 3.4% to 4.3%) to 6.6% (95% CI 6.0 to 7.3%). Conclusion There is scope to optimise the management of ADHD and psychiatric comorbidities in young people, and a need for sustainable models of ADHD care for young adults, supported by appropriate training and specialist services.National Institute for Health Research (NIHR

Resumption of Attention Deficit Hyperactivity Disorder medication in early adulthood: findings from a UK primary care prescribing study

This is the author accepted manuscript. The final version is available from Springer via the DOI in this record.This study aimed to examine resumption of Attention Deficit Hyperactivity Disorder (ADHD) prescriptions in early adulthood in young people whose ADHD prescriptions stopped in adolescence. Whilst prescribing studies indicate that the proportion of those with ADHD stopping treatment in late adolescence remains in excess of the proportion expected to be symptom free, very few studies have examined patterns of resumption amongst young adults previously prescribed medication. Primary care records from the UK Clinical Practice Research Datalink from 2008 to 2013 were used to examine the outcome of resumption of ADHD prescriptions from age 20 years in a sample of cases with ADHD whose prescriptions stopped aged 14-18. A Cox regression model was fitted to explore variables that could theoretically be associated with resumption of prescriptions. Of 1,440 cases, 109 (7.6%) had their ADHD prescriptions resumed. Characteristics associated with an increased probability of resumption included female gender, learning disability, referral to adult mental health services, and prescription of antipsychotic medication. In this study, only a small proportion of adolescents who stopped ADHD medication subsequently resumed their prescriptions in primary care. Those that did resume were a more complex group. As many vulnerable individuals with ongoing ADHD symptoms may not have the resources required to surmount the barriers to re-enter services, the implication is that not all those who could benefit from resuming medication are able to do so. The findings raise questions around whether current care models are flexible enough and whether primary care are adequately supported in managing this group

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

This is the final version. Available on open access from BMC via the DOI in this recordAvailability of data and materials: The datasets generated and/or analysed during the current study are not publicly available as they are under embargo until the end of the CATCh-uS project (2019), but are available from the corresponding author on reasonable request. Data is currently stored securely by the University of Exeter College of Medicine and Health.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.National Institute for Health Research (NIHR

Healthy relationship education programmes for young people: systematic review of outcomes

This is the final version. Available on open access from Routledge via the DOI in this recordThe quality of romantic relationships is associated with mental health and wellbeing throughout the life course. A number of programmes have been developed to support young people in navigating healthy relationships, and a larger role for relationship education was recently formalised in statutory guidance in England. This study aimed to systematically review the evidence base for relationship education programmes. Evaluations of relationship education programmes for young people, including charting of outcome domains and measures, were reviewed, followed by a focussed synthesis of data from studies that included outcome domains of relevance to healthy relationships. Thirty-six studies of seven programmes were found that focussed on one or more outcomes relating to healthy relationship skills, knowledge and attitudes, none of which were assessed as high quality. All evaluated programmes were developed in the US, and only one evaluation was conducted in the UK. The evaluations had a diverse set of outcome domains and outcome measures, few had longitudinal measures. No evidence was found for young people’s involvement in programme or evaluation development. High-quality longitudinal evaluations and a core set of validated outcome measures are needed. This research also highlights the need to co-create programmes with young people, teachers and relationship experts that are feasible, acceptable and integrated into a mental health-informed curriculumWellcome Trus

Children and young people’s reported contact with professional services for mental health concerns: a secondary data analysis

This is the final version. Available on open access from Springer via the DOI in this recordData availability: MHCYP 2017 survey data is available through data access request to NHS England’s DARS service, [email protected] and young people’s mental health services have been under increasing pressure following COVID-19. Understanding, for which channels help is sought from, will highlight services needing support. This study aims to explore the professional services that parents of children, and young people get help from when they have a concern for the child’s/their mental health. Secondary analysis of data is taken from Mental Health of Children and Young People in England Survey, 2017. 7608 reports of mental health-related contact with professional services from parents of 5–16 year-olds and self-reports from young people aged 17–19 were available. Service contact was reported by Diagnostic and Statistical Manual of Mental Disorders (DSM-V) diagnosis, age, gender and ethnicity. Less than two-thirds of children and young people with a DSM-V diagnosis (63.5% (95% CI 58.6–68.1) aged 5–10, and 64.0% (95% CI 59.4–68.4) aged 11–16) reported contact with any professional services. The figure was lower for those aged 17–19; 50.1% (95% CI 42.8–58.2), p = 0.005. Children and young people aged 5–16 from Black (11.7%; 95% CI 2.4–41.4), Asian (55.1%; 95% CI 34.7–73.9) and Mixed (46.0%; 95% CI 32.4–60.3) ethnic groups reported less contact with professional services compared to those from the White group (66.9%; 95% CI 63.5–70.2). Patterns of service access during the three main educational stages aid with understanding service need during childhood. These lower levels of reported service access for young people aged 17–19 with a DSM-V diagnosis and those in ethnic minority groups demand further investigation.National Institute for Health and Care Research (NIHR)DHS

Transition between child and adult services for young people with ADHD: findings from a British national surveillance study

This is the author accepted manuscript. The final version is available from Cambridge University Press via the DOI in this record.Data Availability: Data is currently stored securely by the University of Exeter Medical School, under embargo until the end of the CATCh-uS project (2019).Background: Optimal transition involves continuity, joint care, planning meetings and information transfer. To plan services, commissioners and service providers need data on how many people require that service. Although Attention-Deficit/Hyperactivity Disorder (ADHD) frequently persists into adulthood, evidence is limited on transitions between child and adult services. Aims: To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and describe the proportion that experienced optimal transition. Methods: Surveillance over twelve months using the British Paediatric Surveillance Unit and the 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 cases 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. Cases 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 eligible cases to be on medication, these estimates will represent the lower limit of the need for transition. 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.National Institute for Health Research (NIHR

Experiences of help-seeking from professional services for a child or young person’s mental health concerns during the pandemic: A qualitative study

This is the final version. Available from Public Library of Science via the DOI in this record. Introduction The immediate response to the Covid-19 pandemic saw school closures and a shift in provision to online health services for children and young people experiencing mental health concerns. This study provides mental health and referral services with an insight into difficulties experienced as well as recommendations on potential improvements. Methods Semi-structured interviews with 11 parents and six young people. Reflexive thematic analysis was used to analyse the data. Results Parents and young people reported mixed experiences on accessing mental health support. Priorities and pressures on health services impacted the likelihood of choosing to seek and being able to obtain help. Parents and young people had varying expectations and experiences in help-seeking during the pandemic which were also impacted by others’ experiences and views. For many, the relationship with the professional they were in contact with impacted their mental health treatment. Provision was sometimes accessed via private services due to long waiting lists or problems that did not “meet threshold”. Conclusion Understanding the experiences of seeking mental healthcare during the pandemic can inform improvements to access to services at a time when people are most vulnerable. Accessible provision other than private services needs to be made for those on waiting lists. For those who do not meet service threshold, intermediary support needs to be secured to prevent unnecessary exacerbation of symptoms and prolonged problems. If schools are to remain the hub for children and young people’s mental health services, they should be considered essential services at all times.UK Research and InnovationNational Institute for Health Researc

Protocol for the mixed methods, Managing young people (aged 16–25) with Attention deficit hyperactivity disorder in Primary care (MAP) study: mapping current practice and co-producing guidance to improve healthcare in an underserved population

This is the final version. Available from BMJ Publishing via the DOI in this record. Introduction: Attention deficit hyperactivity disorder (ADHD) is the most common neurodevelopmental disorder in children and adolescents, with an average worldwide prevalence of 5%. Up to 40% of young people continue to experience symptoms into adulthood. Young people with ADHD experience poorer outcomes than their peers across multiple domains, with treatment shown to reduce these risks. Primary care practitioners play an important role in healthcare provision for this group in the UK. However, many feel unsure about how best to provide support, reporting prescribing concerns and need for more evidence-based guidance. A lack of national data on primary care provision hinders efforts to improve access to care and optimise outcomes. This mixed-methods study aims to provide evidence that may be used to improve primary care services for young people aged 16–25 years with ADHD. Methods and analysis: There are three interlinked work packages: (a) a mapping study including a survey of stakeholders (healthcare professionals, people with ADHD and commissioners) will map ADHD prescribing practice, shared-care arrangements, available support and practitioner roles by geographic locations across England for different respondent groups; (b) a qualitative study involving semi-structured interviews with stakeholders (10–15 healthcare professionals and 10–15 people with ADHD) will explore experiences of ‘what works’ and ‘what is needed’ in terms of service provision and synthesise findings; (c) workshops will integrate findings from (a) and (b) and work with stakeholders to use this evidence to codevelop key messages and guidance to improve care. Ethics and dissemination: The protocol has been approved by Yorkshire and the Humber—Bradford Leeds Research Ethics Committee. Recruitment commenced in September 2022. Findings will be disseminated via research articles in peer-reviewed journals, conference presentations, public involvement events, patient groups and media releases. A summary of study findings will be shared with participants at the end of the study. Trial registration number NCT05518435.National Institute for Health Research (NIHR)National Institute for Health Research (NIHR)National Institute for Health Research (NIHR