Treatments and Outcomes Among Patients with Sydenham Chorea: A Meta-Analysis.

Importance: Sydenham chorea is the most common acquired chorea of childhood worldwide; however, treatment is limited by a lack of high-quality evidence. Objectives: To evaluate historical changes in the clinical characteristics of Sydenham chorea and identify clinical and treatment factors at disease onset associated with chorea duration, relapsing disease course, and functional outcome. Data Sources: The systematic search for this meta-analysis was conducted in PubMed, Embase, CINAHL, Cochrane Library, and LILACS databases and registers of clinical trials from inception to November 1, 2022 (search terms: [Sydenham OR Sydenham's OR rheumatic OR minor] AND chorea). Study Selection: Published articles that included patients with a final diagnosis of Sydenham chorea (in selected languages). Data Extraction and Synthesis: This study followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline. Individual patient data on clinical characteristics, treatments, chorea duration, relapse, and final outcome were extracted. Data from patients in the modern era (1945 through 2022) were entered into multivariable models and stratified by corticosteroid duration for survival analysis of chorea duration. Main Outcomes and Measures: The planned study outcomes were chorea duration at onset, monophasic course (absence of relapse after ≥24 months), and functional outcome (poor: modified Rankin Scale score 2-6 or persisting chorea, psychiatric, or behavioral symptoms at final follow-up after ≥6 months; good: modified Rankin Scale score 0-1 and no chorea, psychiatric, or behavioral symptoms at final follow-up). Results: In total, 1479 patients were included (from 307 articles), 1325 since 1945 (median [IQR] age at onset, 10 [8-13] years; 875 of 1272 female [68.8%]). Immunotherapy was associated with shorter chorea duration (hazard ratio for chorea resolution, 1.51 [95% CI, 1.05-2.19]; P = .03). The median chorea duration in patients receiving 1 or more months of corticosteroids was 1.2 months (95% CI, 1.2-2.0) vs 2.8 months (95% CI, 2.0-3.0) for patients receiving none (P = .004). Treatment factors associated with monophasic disease course were antibiotics (odds ratio [OR] for relapse, 0.28 [95% CI, 0.09-0.85]; P = .02), corticosteroids (OR, 0.32 [95% CI, 0.15-0.67]; P = .003), and sodium valproate (OR, 0.33 [95% CI, 0.15-0.71]; P = .004). Patients receiving at least 1 month of corticosteroids had significantly lower odds of relapsing course (OR, 0.10 [95% CI, 0.04-0.25]; P < .001). No treatment factor was associated with good functional outcome. Conclusions and Relevance: In this meta-analysis of treatments and outcomes in patients with Sydenham chorea, immunotherapy, in particular corticosteroid treatment, was associated with faster resolution of chorea. Antibiotics, corticosteroids and sodium valproate were associated with a monophasic disease course. This synthesis of retrospective data should support the development of evidence-based treatment guidelines for patients with Sydenham chorea.

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

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.

Support for primary care prescribing for adult ADHD in England: national survey.

BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder with effective pharmacological treatments that improve symptoms and reduce complications. NICE guidelines recommend primary care practitioners prescribe medication for adult ADHD under shared care agreements with adult mental health services (AMHS). However, provision remains uneven, with some practitioners reporting a lack of support. AIM: This study aimed to describe supportive elements (prescribing, shared care, AMHS availability) of primary care prescribing for adult ADHD medication in England, to inform service improvement and improve access for this underserved population. DESIGN AND SETTING: Three interlinked cross-sectional surveys asked every integrated care board (ICB) in England (Commissioners), and convenience samples of healthcare professionals (HP) and people with lived experience (LE), about elements supporting pharmacological treatment of ADHD in primary care. METHOD: Descriptive analyses used percentages and confidence intervals to summarise responses by stakeholder group. Variations in reported provision and practice were explored and displayed visually using mapping software. RESULTS: Data from 782 respondents (42 Commissioners; 331 HP; 409 LE) revealed differences in reported provision by stakeholder group, including for prescribing (94.6% of HP vs 62.6% of LE). Over 40% of respondents reported extended AMHS waiting times of two years or more. There was some variability by NHS region, for example London had highest rates of HP reported prescribing (100%), and lowest reported extended waiting times (25.0%). CONCLUSION: Elements supporting appropriate shared care prescribing of ADHD medication via primary care are not universally available in England. Co-ordinated approaches are needed to address these gaps.

5-year mental health outcomes for children and adolescents presenting with psychiatric symptoms to general practitioners in England: a retrospective cohort study.

BACKGROUND: Little information is available on the clinical trajectories of children and adolescents who attend general practice (GP) with psychiatric symptoms. We aimed to examine 5-year service use in English primary care for children and adolescents with neurodevelopmental or mental health symptoms or diagnoses. METHODS: In this retrospective cohort study, we used anonymised primary care health records from the Clinical Practice Research Datalink Aurum database (CPRD-Aurum). We identified children and adolescents (aged 3-18 years) presenting to primary care in England between Jan 1, 2000, and May 9, 2016, with a symptom or diagnosis of a mental health, behavioural, or neurodevelopmental condition. Participants were excluded if they had less than 1 year of follow-up. We followed up participants from their index date until either death, transfer out of the practice, or the end of data collection on May 5, 2021, and for trajectory analysis we limited follow-up to 5 years. We used group-based multi-trajectory models to identify clusters with similar trajectories over 5 years of follow-up for three primary outcomes: mental health-related GP contacts, psychotropic medication prescriptions, and specialist mental health-care contact. We did survival analysis to examine the associations between trajectory-group membership and hospital admission for self-harm or death by suicide, as indicators of severe psychiatric distress. FINDINGS: We included 369 340 children and adolescents, of whom 180 863 (49·0%) were girls, 188 438 (51·0%) were boys, 39 (<0·1%) were of indeterminate gender, 290 125 (78·6%) were White, 9161 (2·5%) were South Asian, 10 418 (2·8%) were Black, 8115 (2·2%) were of mixed ethnicity, and 8587 (2·3%) were other ethnicities, and the median age at index presentation was 13·6 years (IQR 8·4-16·7). In the best-fitting, seven-group, group-based multi-trajectory model, over a 5-year period, the largest group (low contact; 207 985 [51·2%]) had low rates of additional service contact or psychotropic prescriptions. The other trajectory groups were moderate, non-pharmacological contact (43 836 [13·0%]); declining contact (25 469 [8·7%]); year-4 escalating contact (18 277 [6·9%]); year-5 escalating contact (18 139; 5·2%); prolonged GP contact (32 147 [8·6%]); and prolonged specialist contact (23 487 [6·5%]). Non-White ethnicity and presentation in earlier study years (eg, 2000-2004) were associated with low-contact group membership. The prolonged specialist-contact group had the highest risk of hospital admission for self-harm (hazard ratio vs low-contact group 2·19 [95% CI 2·03-2·36]) and suicide (2·67 [1·72-4·14]). INTERPRETATION: Most children and adolescents presenting to primary care with psychiatric symptoms or diagnoses have low or declining rates of ongoing contact. If these trajectories reflect symptomatic improvement, these findings provide reassurance for children and adolescents and their caregivers. However, these trajectories might reflect an unmet need for some children and adolescents. FUNDING: National Institute for Health and Care Research and the Wellcome Trust.

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.

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

Children 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.

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.

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.

Educational experiences of young people with ADHD in the UK: Secondary analysis of qualitative data from the CATCh-uS mixed-methods study.

BACKGROUND: Attention 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. METHODS: In 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. RESULTS: Two 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. CONCLUSIONS: Educational 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.

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.

Annual Research Review: The impact of Covid-19 on psychopathology in children and young people worldwide: systematic review of studies with pre- and within-pandemic data.

BACKGROUND: The high volume and pace of research has posed challenges to researchers, policymakers and practitioners wanting to understand the overall impact of the pandemic on children and young people's mental health. We aimed to search for and review the evidence from epidemiological studies to answer the question: how has mental health changed in the general population of children and young people? METHODS: Four databases (Medline, CINAHL, EMBASE and PsychINFO) were searched in October 2021, with searches updated in February 2022. We aimed to identify studies of children or adolescents with a mean age of 18 years or younger at baseline, that reported change on a validated mental health measure from prepandemic to during the pandemic. Abstracts and full texts were double-screened against inclusion criteria and quality assessed using a risk of bias tool. Studies were narratively synthesised, and meta-analyses were performed where studies were sufficiently similar. RESULTS: 6917 records were identified, and 51 studies included in the review. Only four studies had a rating of high quality. Studies were highly diverse in terms of design, setting, timing in relation to the pandemic, population, length of follow-up and choice of measure. Methodological heterogeneity limited the potential to conduct meta-analyses across studies. Whilst the evidence suggested a slight deterioration on some measures, overall, the findings were mixed, with no clear pattern emerging. CONCLUSIONS: Our findings highlight the need for a more harmonised approach to research in this field. Despite the sometimes-inconsistent results of our included studies, the evidence supports existing concerns about the impact of Covid-19 on children's mental health and on services for this group, given that even small changes can have a significant impact on provision at population level. Children and young people must be prioritised in pandemic recovery, and explicitly considered in planning for any future pandemic response.

Learning how relationships work: a thematic analysis of young people and relationship professionals' perspectives on relationships and relationship education.

BACKGROUND: Relationships in various forms are an important source of meaning in people's lives that can benefit their health, wellbeing and happiness. Relationship distress is associated with public health problems such as alcohol misuse, obesity, poor mental health, and child poverty, whilst safe, stable, and nurturing relationships are potential protective factors. Despite increased emphasis on Relationship Education in schools, little is known about the views of relationship professionals on relationship education specifically, and how this contrasts with the views of young people (YP). This Wellcome Centre for the Cultures and Environments of Health funded Beacon project seeks to fill this gap by exploring their perspectives and inform the future development of relationship education. METHODS: We conducted focus groups with YP (n = 4) and interviews with relationship professionals (n = 10). The data was then thematically analysed. RESULTS: Themes from YP focus groups included: 'Good and bad relationships'; 'Learning about relationships'; 'the role of schools' and 'Beyond Relationship Education'. Themes from interviews with relationship professionals included: 'essential qualities of healthy relationships'; 'how YP learn to relate' and 'the role of Relationship Education in schools'. CONCLUSIONS: YP and relationship professionals recognised the importance of building YP's relational capability in schools with a healthy relationship with oneself at its foundation. Relationship professionals emphasised the need for a developmental approach, stressing the need for flexibility, adaptability, commitment and resilience to maintain relationships over the life course. YP often presented dichotomous views, such as relationships being either good or bad relationships, and perceived a link between relationships and mental health. Although not the focus of current curriculum guidance, managing relationship breakdowns and relationship transitions through the life course were viewed as important with an emphasis on building relational skills. This research suggests that schools need improved Relationship Education support, including specialist expertise and resources, and guidance on signposting YP to external sources of help. There is also potential for positive relationship behaviours being modelled and integrated throughout curriculums and reflected in a school's ethos. Future research should explore co-development, evaluation and implementation of Relationship Education programmes with a range of stakeholders.

Trends in comorbid physical and mental health conditions in children from 1999 to 2017 in England.

INTRODUCTION: Children with long-term physical health conditions (pLTCs) are at increased risk of mental health conditions but less is known about time trends in the mental health of this group of children. METHODS: We used data from three comparable, population-based surveys of children conducted in 1999, 2004, and 2017. We examined whether the proportion of children aged 5-15 years old with comorbid mental health conditions (measured using the multi-informant Development and Well-being Assessment tool) and pLTCs (measured using parental report) in England increased from 1999 to 2017 using linear regression analysis. RESULTS: Our analysis used data from 8662 (1999), 6401 (2004) and 6219 (2017) children, respectively. The proportion of children with comorbid pLTCs and psychiatric disorders was 0.050 (95% CI = 0.045, 0.055) in 1999, 0.054 (95% CI = 0.049, 0.060) in 2004, and 0.059 (95% CI = 0.053, 0.065) in 2017. The linear regression model revealed a non-significant effect of time on the proportion of children with comorbid pLTCs and psychiatric disorders from 1999 to 2017 (B = 0.0004785; SE = 0.0001256; p = 0.163). CONCLUSION: The estimated prevalence of school-aged children with comorbid pLTCs and mental health conditions in England remained stable since 1999, highlighting the need to prioritize mental health resources for children with physical health comorbidities.

How does the increase in eating difficulties according to the Development and Well-Being Assessment screening items relate to the population prevalence of eating disorders? An analysis of the 2017 Mental Health in Children and Young People survey.

OBJECTIVE: We examine the test accuracy of the Development and Well-Being Assessment (DAWBA) eating disorder screening items to explore whether the increased eating difficulties detected in the English National Mental Health of Children and Young People (MHCYP) Surveys 2021 reflect an increased population prevalence. METHODS: Study 1 calculated sensitivity, specificity, and positive and negative predictive values from responses to the DAWBA screening items from 4057 11-19-year-olds and their parents, in the 2017 MHCYP survey. Study 2 applied the positive predictive value to data from 1844 11-19-year-olds responding to the 2021 follow-up to estimate the prevalence of eating disorders in England compared to 2017 prevalence. RESULTS: Parental report most accurately predicted an eating disorder (93.6%, 95% confidence interval: 92.7-94.5). Sensitivity increased when parent and child answers were combined, and with a higher threshold (of two) for children. The prevalence of eating disorders in 2021 was 1% in 17-19-year-olds, and .6% in 11-16-year-olds-similar to the prevalence reported in 2017 (.8% and .6%, respectively). However, estimates for boys (.2%-.4%) and young men (.0%-.4%) increased. DISCUSSION: We found tentative evidence of increased population prevalence of eating disorders, particularly among young men. Despite this, the DAWBA screening items are useful for ruling out eating disorders, particularly when parents or carers screen negative, but are relatively poor at predicting who will have a disorder. Data from both parents and children and applying a higher cut point improves accuracy but at the expense of more missed cases. PUBLIC SIGNIFICANCE STATEMENT: The prevalence of eating disorders did not markedly change from 2017 to 2021, but we found tentative evidence of an increase, particularly among young men. This is despite larger increases in problematic eating, which need further investigation. The DAWBA screen is best suited to ruling out eating disorders which limits its clinical applications as it would provide many false positives requiring further assessment.

Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations.

BACKGROUND: ADHD in adults is a common and debilitating neurodevelopmental mental health condition. Yet, diagnosis, clinical management and monitoring are frequently constrained by scarce resources, low capacity in specialist services and limited awareness or training in both primary and secondary care. As a result, many people with ADHD experience serious barriers in accessing the care they need. METHODS: Professionals across primary, secondary, and tertiary care met to discuss adult ADHD clinical care in the United Kingdom. Discussions identified constraints in service provision, and service delivery models with potential to improve healthcare access and delivery. The group aimed to provide a roadmap for improving access to ADHD treatment, identifying avenues for improving provision under current constraints, and innovating provision in the longer-term. National Institute for Health and Care Excellence (NICE) guidelines were used as a benchmark in discussions. RESULTS: The group identified three interrelated constraints. First, inconsistent interpretation of what constitutes a 'specialist' in the context of delivering ADHD care. Second, restriction of service delivery to limited capacity secondary or tertiary care services. Third, financial limitations or conflicts which reduce capacity and render transfer of care between healthcare sectors difficult. The group recommended the development of ADHD specialism within primary care, along with the transfer of routine and straightforward treatment monitoring to primary care services. Longer term, ADHD care pathways should be brought into line with those for other common mental health disorders, including treatment initiation by appropriately qualified clinicians in primary care, and referral to secondary mental health or tertiary services for more complex cases. Long-term plans in the NHS for more joined up and flexible provision, using a primary care network approach, could invest in developing shared ADHD specialist resources. CONCLUSIONS: The relegation of adult ADHD diagnosis, treatment and monitoring to specialist tertiary and secondary services is at odds with its high prevalence and chronic course. To enable the cost-effective and at-scale access to ADHD treatment that is needed, general adult mental health and primary care must be empowered to play a key role in the delivery of quality services for adults with ADHD.

In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD.

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 15 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.

Annual Research Review: A systematic review of mental health services for emerging adults - moulding a precipice into a smooth passage.

BACKGROUND: The transition between child and adult services should aim to support young people into the next stage of their life in a way that optimises their function. Yet financial, organisational and procedural barriers to continuity of care often hamper smooth transition between child and adult services. AIM AND METHOD: We reviewed studies of transition from child to adult mental health services, focusing on: (a) rates of referrals and referral acceptance; (b) barriers and facilitators of successful transition; (c) continuity of care during and post-transition and (d) service users' experience of transition. Studies were identified through systematic searches of electronic databases: PsycINFO, Medline, Embase and Child Development and Adolescent Studies. FINDINGS: Forty-seven papers describing 43 unique studies met inclusion criteria. Service provision is influenced by previous history and funding processes, and the presence or absence of strong primary care, specialist centres of excellence and coordination between specialist and primary care. Provision varies between and within countries, particularly whether services are restricted to 'core' mental health or broader needs. Unsupportive organisational culture, fragmentation of resources, skills and knowledge base undermine the collaborative working essential to optimise transition. Stigma and young people's concerns about peers' evaluation often prompt disengagement and discontinuation of care during transition, leading to worsening of symptoms and later, to service re-entry. Qualitative studies reveal that young people and families find the transition process frustrating and difficult, mainly because of lack of advanced planning and inadequate preparation. CONCLUSIONS: Despite increasing research interest over the last decade, transition remains 'poorly planned, executed and experienced'. Closer collaboration between child and adult services is needed to improve the quality of provision for this vulnerable group at this sensitive period of development.

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.

Failure of Healthcare Provision for Attention-Deficit/Hyperactivity Disorder in the United Kingdom: A Consensus Statement.

Background: Despite evidence-based national guidelines for ADHD in the United Kingdom (UK), ADHD is under-identified, under-diagnosed, and under-treated. Many seeking help for ADHD face prejudice, long waiting lists, and patchy or unavailable services, and are turning to service-user support groups and/or private healthcare for help. Methods: A group of UK experts representing clinical and healthcare providers from public and private healthcare, academia, ADHD patient groups, educational, and occupational specialists, met to discuss shortfalls in ADHD service provision in the UK. Discussions explored causes of under-diagnosis, examined biases operating across referral, diagnosis and treatment, together with recommendations for resolving these matters. Results: Cultural and structural barriers operate at all levels of the healthcare system, resulting in a de-prioritization of ADHD. Services for ADHD are insufficient in many regions, and problems with service provision have intensified as a result of the response to the COVID-19 pandemic. Research has established a range of adverse outcomes of untreated ADHD, and associated long-term personal, social, health and economic costs are high. The consensus group called for training of professionals who come into contact with people with ADHD, increased funding, commissioning and monitoring to improve service provision, and streamlined communication between health services to support better outcomes for people with ADHD. Conclusions: Evidence-based national clinical guidelines for ADHD are not being met. People with ADHD should have access to healthcare free from discrimination, and in line with their legal rights. UK Governments and clinical and regulatory bodies must act urgently on this important public health issue.