Charlotte L. Hall

Transition to adult mental health services for young people with Attention Deficit/Hyperactivity Disorder (ADHD): a qualitative analysis of their experiences

BackgroundThere is little research on the process of transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). More recently, there is growing recognition that Attention Deficit/Hyperactivity Disorder (ADHD) may persist into adulthood requiring services beyond age 18. However, despite National Institute for Health and Clinical Excellence (NICE) Guidance which recommends specialist services for adults with ADHD, there is currently a lack of such services in the UK. The aim of the current study is to explore the experiences of young people with ADHD during transition from CAMHS to AMHS.MethodSemi-structured qualitative interviews with ADHD patients accessing CAMHS clinics in Nottinghamshire were analysed using thematic analysis.ResultsTen semi-structured interviews were transcribed and analysed. We found that patients’ relationships with their clinician were a key factor in both their reported experience of CAMHS and the transition process. Perceived responsibility of care was also pivotal in how the transition process was viewed. Nature and severity of problems and patients expectations of adult services were also contributing factors in the transition process. The need for continued parental support was openly accepted and thought to be required by the majority of young people with ADHD during transition.ConclusionsTimely preparation, joint working, good clinician relationships and parental support serve to facilitate the process of transition for young people with ADHD. Nature and severity of problems are perceived to impede or facilitate transition, with predominantly more ‘complex presentations’ with associated mental health problems more familiar to AMHS (e.g. self-harm, depression) making for smoother transitions to adult services. Transitions to AMHS were more difficult when ADHD was viewed as the main or sole clinical problem. Further exploration of young people’s experiences of transition and their engagement with and experience of adult services is required to provide an overall picture of facilitators to successful transition and integration into adult services.

'Mind the gap' - mapping services for young people with ADHD transitioning from child to adult mental health services

BackgroundOnce considered to be a disorder restricted to childhood, Attention Deficit/Hyperactivity Disorder (ADHD) is now recognised to persist into adult life. However, service provision for adults with ADHD is limited. Additionally, there is little guidance or research on how best to transition young people with ADHD from child to adult services.MethodWe report the findings of a survey of 96 healthcare professionals working in children’s (Child and Adolescent Mental Health Services and Community Paediatrics) and adult services across five NHS Trusts within the East Midlands region of England to gain a better understanding of the current provision of services for young people with ADHD transitioning into adult mental health services.ResultsOur findings indicate a lack of structured guidelines on transitioning and little communication between child and adult services. Child and adult services had differing opinions on what they felt adult services should provide for ADHD cases. Adult services reported feeling ill-prepared to deal with ADHD patients, with clinicians in these services citing a lack of specific knowledge of ADHD and a paucity of resources to deal with such cases.ConclusionsWe discuss suggestions for further research, including the need to map the national provision of services for adults with ADHD, and provide recommendations for commissioned adult ADHD services. We specifically advocate an increase in ADHD-specific training for clinicians in adult services, the development of specialist adult ADHD clinics and greater involvement of Primary Care to support the work of generic adult mental health services in adult ADHD management.

Implementation of routine outcome measurement in child and adolescent mental health services in the United Kingdom: a critical perspective

The aim of this commentary is to provide an overview of clinical outcome measures that are currently recommended for use in UK Child and Adolescent Mental Health Services (CAMHS), focusing on measures that are applicable across a wide range of conditions with established validity and reliability, or innovative in their design. We also provide an overview of the barriers and drivers to the use of Routine Outcome Measurement (ROM) in clinical practice.

The use of routine outcome measures in two child and adolescent mental health services: a completed audit cycle.

BackgroundRoutine outcome measurement (ROM) is important for assessing the clinical effectiveness of health services and for monitoring patient outcomes. Within Child and Adolescent Mental Health Services (CAMHS) in the UK the adoption of ROM in CAMHS has been supported by both national and local initiatives (such as government strategies, local commissioning policy, and research).MethodsWith the aim of assessing how these policies and initiatives may have influenced the uptake of ROM within two different CAMHS we report the findings of two case-note audits: a baseline audit conducted in January 2011 and a re-audit conducted two years later in December 2012-February 2013.ResultsThe findings show an increase in both the single and repeated use of outcome measures from the time of the original audit, with repeated use (baseline and follow-up) of the Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) scale increasing from 10% to 50% of cases. Re-audited case-notes contained more combined use of different outcome measures, with greater consensus on which measures to use. Outcome measures that were applicable across a wide range of clinical conditions were more likely to be used than symptom-specific measures, and measures that were completed by the clinician were found more often than measures completed by the service user.ConclusionsThe findings show a substantial improvement in the use of outcome measures within CAMHS. These increases in use were found across different service organisations which were subject to different types of local service priorities and drivers.

Services for young people with attention deficit/hyperactivity disorder transitioning from child to adult mental health services: A national survey of mental health trusts in England

Transition from child to adult mental health services is considered to be a difficult process, particularly for individuals with neurodevelopmental disorders such as attention deficit/hyperactivity disorder (ADHD). This article presents results from a national survey of 36 mental health National Health Service (NHS) trusts across England, the findings indicate a lack of accurate data on the number of young people with ADHD transitioning to, and being seen by, adult services. Less than half of the trusts had a specialist adult ADHD service and in only a third of the trusts were there specific commissioning arrangements for adult ADHD. Half of the trusts reported that young people with ADHD were prematurely discharged from child and adolescent mental health services (CAMHS) because there were no suitable adult services. There was also a lack of written transition protocols, care pathways, commissioned services for adults with ADHD and inadequate information sharing between services. The findings advocate the need to provide a better transition service underpinned by clear, structured guidelines and protocols, routine data collection and information sharing across child and adult services. An increase in the commission of specialist adult ADHD clinics is needed to ensure individuals have access to appropriate support and care.

The clinical utility of the continuous performance test and objective measures of activity for diagnosing and monitoring ADHD in children: a systematic review.

Attention-deficit hyperactivity disorder (ADHD) is typically diagnosed using clinical observation and subjective informant reports. Once children commence ADHD medication, robust monitoring is required to detect partial or non-responses. The extent to which neuropsychological continuous performance tests (CPTs) and objective measures of activity can clinically aid the assessment and titration process in ADHD is not fully understood. This review describes the current evidence base for the use of CPTs and objectively measured activity to support the diagnostic procedure and medication management for children with ADHD. Four databases (PsycINFO, Medline, Allied and Complementary Medicine (AMED), and PsycARTICLES) were systematically searched to understand the current evidence base for (1) the use of CPTs to aid clinical assessment of ADHD; (2) the use of CPTs to aid medication management; and (3) the clinical utility of objective measures of activity in ADHD. Sixty relevant articles were identified. The search revealed six commercially available CPTs that had been reported on for their clinical use. There were mixed findings with regard to the use of CPTs to assess and manage medication, with contrasting evidence on their ability to support clinical decision-making. There was a strong evidence base for the use of objective measures of activity to aid ADHD/non-ADHD group differentiation, which appears sensitive to medication effects and would also benefit from further research on their clinical utility. The findings suggest that combining CPTs and an objective measure of activity may be particularly useful as a clinical tool and worthy of further pursuit.

A qualitative process evaluation of electronic session-by-session outcome measurement in child and adolescent mental health services

BackgroundRegular monitoring of patient progress is important to assess the clinical effectiveness of an intervention. Recently, initiatives within UK child and adolescent mental health services (CAMHS) have advocated the use of session-by-session monitoring to continually evaluate the patient’s outcome throughout the course of the intervention. However, the feasibility and acceptability of such regular monitoring is unknown.MethodSemi-structured qualitative interviews were conducted with clinicians (n = 10), administrative staff (n = 8) and families (n = 15) who participated in a feasibility study of an electronic session-by-session outcome monitoring tool, (SxS), which is based on the Strengths and Difficulties Questionnaire (SDQ). This study took place in three CAMHS clinics in Nottinghamshire. The interview transcripts were thematically analysed.ResultsWe found clinicians accepted the need to complete outcome measures, particularly valuing those completed by the patient. However, there were some difficulties with engaging clinicians in this practice and in the training offered. Generally, patients were supportive of completing SxS in the waiting room prior to the clinic session and assistance with the process from administrative staff was seen to be a key factor. Clinicians and families found the feedback reports created from SxS to be helpful for tracking progress, facilitating communication and engagement, and as a point of reflection. The use of technology was considered positively, although some technological difficulties hindered the completion of SxS. Clinicians and families appreciated the brevity of SxS, but some were concerned that a short questionnaire could not adequately encapsulate the complexity of the patient’s issues.ConclusionsThe findings show the need for appropriate infrastructure, mandatory training, and support to enable an effective system of session-by-session monitoring. Our findings indicate that clinicians, administrative staff and young people and their parents/carers would support regular monitoring if the system is easy to implement, with a standard ‘clinic-wide’ adoption of the procedure, and the resulting data are clinically useful.

Developing mHealth Remote Monitoring Technology for Attention Deficit Hyperactivity Disorder: A Qualitative Study Eliciting User Priorities and Needs

Background Guidelines in the United Kingdom recommend that medication titration for attention deficit hyperactivity disorder (ADHD) should be completed within 4-6 weeks and include regular reviews. However, most clinicians think that weekly clinic contact is infeasible, and audits have shown that this timeline is rarely achieved. Thus, a more effective monitoring and review system is needed; remote monitoring technology (RMT) may be one way to improve current practice. However, little is known about whether patients with ADHD, their families, and clinicians would be interested in using RMT. Objective To explore patients’, parents’, and health care professionals’ views and attitudes toward using digital technology for remote monitoring during titration for ADHD. Methods This was a qualitative study, and data were collected through 11 focus groups with adults and young people with ADHD, parents of children with ADHD, and health care professionals (N=59). Results All participant groups were positive about using RMT in the treatment of ADHD, but they were also aware of barriers to its use, especially around access to technology and integrating RMT into clinical care. They identified that RMT had the most potential for use in the ongoing management and support of ADHD, rather than during the distinct titration period. Participants identified features of RMT that could improve the quality of consultations and support greater self-management. Conclusions RMT has the potential to augment support and care for ADHD, but it needs to go beyond the titration period and offer more to patients and families than monitoring through outcome measures. Developing and evaluating an mHealth app that incorporates the key features identified by end users is required.

Protocol investigating the clinical utility of an objective measure of activity and attention (QbTest) on diagnostic and treatment decision-making in children and young people with ADHD—‘Assessing QbTest Utility in ADHD’ (AQUA): a randomised controlled trial

Introduction The National Institute for Health and Care Excellence (NICE) guidelines for attention deficit/hyperactivity disorder (ADHD) state that young people need to have access to the best evidence-based care to improve outcome. The current ‘gold standard’ ADHD diagnostic assessment combines clinical observation with subjective parent, teacher and self-reports. In routine practice, reports from multiple informants may be unavailable or contradictory, leading to diagnostic uncertainty and delay. The addition of objective tests of attention and activity may help reduce diagnostic uncertainty and delays in initiating treatment leading to improved outcomes. This trial investigates whether providing clinicians with an objective report of levels of attention, impulsivity and activity can lead to an earlier, and more accurate, clinical diagnosis and improved patient outcome. Methods and analysis This multisite randomised controlled trial will recruit young people (aged 6–17 years old) who have been referred for an ADHD diagnostic assessment at Child and Adolescent Mental Health Services (CAMHS) and Community Paediatric clinics across England. Routine clinical assessment will be augmented by the QbTest, incorporating a continuous performance test (CPT) and infrared motion tracking of activity. The participant will be randomised into one of two study arms: QbOpen (clinician has immediate access to a QbTest report): QbBlind (report is withheld until the study end). Primary outcomes are time to diagnosis and diagnostic accuracy. Secondary outcomes include clinicians diagnostic confidence and routine clinical outcome measures. Cost-effective analysis will be conducted, alongside a qualitative assessment of the feasibility and acceptability of incorporating QbTest in routine practice. Ethics and dissemination The findings from the study will inform commissioners, clinicians and managers about the feasibility, acceptability, clinical utility and cost-effectiveness of incorporating QbTest into routine diagnostic assessment of young people with ADHD. The results will be submitted for publication in peer-reviewed journals. The study has received ethical approval. Trial registration number NCT02209116.

Study of user experience of an objective test (QbTest) to aid ADHD assessment and medication management: a multi-methods approach

BackgroundThe diagnosis and monitoring of Attention deficit hyperactivity disorder (ADHD) typically relies on subjective reports and observations. Objective continuous performance tests (CPTs) have been incorporated into some services to support clinical decision making. However, the feasibility and acceptability of adding such a test into routine practice is unknown. The study aimed to investigate the feasibility and acceptability of adding an objective computerised test to the routine assessment and monitoring of attention deficit hyperactivity disorder (ADHD).MethodsSemi-structured interviews were conducted with clinicians (n = 10) and families (parents/young people, n = 20) who participated in a randomised controlled trial. Additionally, the same clinicians (n = 10) and families (n = 76) completed a survey assessing their experience of the QbTest. The study took place in child and adolescent mental health and community paediatric clinics across the UK. Interview transcripts were thematically analysed.ResultsInterviewed clinicians and families valued the QbTest for providing an objective, valid assessment of symptoms. The QbTest was noted to facilitate communication between clinicians, families and schools. However, whereas clinicians were more unanimous on the usefulness of the QbTest, survey findings showed that, although the majority of families found the test useful, less than half felt the QbTest helped them understand the clinician’s decision making around diagnosis and medication. The QbTest was seen as a potentially valuable tool to use early in the assessment process to streamline the care pathway. Although clinicians were conscious of the additional costs, these could be offset by reductions in time to diagnosis and the delivery of the test by a Healthcare Assistant.ConclusionsThe findings indicate the QbTest is an acceptable and feasible tool to implement in routine clinical settings. Clinicians should be mindful to discuss the QbTest results with families to enable their understanding and engagement with the process. Further findings from definitive trials are required to understand the cost/benefit; however, the findings from this study support the feasibility and acceptability of integrating QbTest in the ADHD care pathway.Trial registrationThe findings form the implementation component of the Assessing QbTest Utility in ADHD (AQUA) Trial which is registered with the ISRCTN registry (ISRCTN11727351, retrospectively registered 04 July 2016) and clinicaltrials.gov (NCT02209116, registered 04 August 2014).