Healthcare costs for young people transitioning the boundary between child/adolescent and adult mental health services in seven European countries: results from the MILESTONE study.

BACKGROUND: The boundary between services for children and adolescents and adults has been identified as problematic for young people with mental health problems. AIMS: To examine the use and cost of healthcare for young people engaged in mental healthcare before and after the child/adolescent and adult service boundary. METHOD: Data from 772 young people in seven European countries participating in the MILESTONE trial were analysed. We analysed and costed healthcare resources used in the 6-month period before and after the service boundary. RESULTS: The proportion of young people engaging with healthcare services fell substantially after crossing the service boundary (associated costs €7761 pre-boundary v. €3376 post-boundary). Pre-boundary, the main cost driver was in-patient care (approximately 50%), whereas post-boundary costs were more evenly spread between services; cost reductions were correlated with pre-boundary in-patient care. Severity was associated with substantially higher costs pre- and post-boundary, and those who were engaged specifically with mental health services after the service boundary accrued the greatest healthcare costs post-service boundary. CONCLUSIONS: Costs of healthcare are large in this population, but fall considerably after transition, particularly for those who were most severely ill. In part, this is likely to reflect improvement in the mental health of young people. However, qualitative evidence from the MILESTONE study suggests that lack of capacity in adult services and young people's disengagement with formal mental health services post-transition are contributing factors. Long-term data are needed to assess the adverse long-term effects on costs and health of this unmet need and disengagement.

Are Psychiatrists Trained to Address the Mental Health Needs of Young People Transitioning From Child to Adult Services? Insights From a European Survey.

BACKGROUND: In mental health, transition refers to the pathway of young people from child and adolescent to adult services. Training of mental health psychiatrists on transition-related topics offers the opportunity to improve clinical practice and experiences of young people reaching the upper age limit of child and adolescent care. METHODS: National psychiatrist's organizations or experts from 21 European countries were surveyed 1/ to describe the status of transition in adult psychiatry (AP) and child and adolescent psychiatry (CAP) postgraduate training in Europe; 2/ to explore the amount of cross-training between both specialties. This survey was a part of the MILESTONE project aiming to study and improve the transition process of young people at the service boundary. RESULTS: Transition was a mandatory topic in the AP curriculum of 1/19 countries (5%) and in the CAP curriculum of 4/17 countries (24%). Most topics relevant for transition planning were addressed during AP training in 7/17 countries (41%) to 10/17 countries (59%), and during CAP training in 9/11 countries (82%) to 13/13 countries (100%). Depending on the training models, theoretical education in CAP was mandatory during AP training in 94% (15/16) to 100% of the countries (3/3); and in AP during CAP training in 81% (13/16) to 100% of the countries (3/3). Placements were mandatory in CAP during AP training in 67% (2/3) to 71% of the countries (12/17); and in AP during CAP training in 87% (13/15) to 100% of the countries (3/3). DISCUSSION AND CONCLUSION: Specific training about transition is limited during CAP and AP postgraduate training in Europe. Cross-training between both specialties offers a basis for improved communication between child and adult services but efforts should be sustained in practical training. Recommendations are provided to foster further development and meet the specific needs of young people transitioning to adult services.

A cross-cultural qualitative study of the ethical aspects in the transition from child mental health services to adult mental health services.

BACKGROUND: Transitioning from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) raises novel ethical aspects for healthcare professionals, as well as for young people, their parents and carers. METHOD: Focus groups were conducted in Croatia, Ireland and the United Kingdom with youth mental health groups and youth representatives with no mental health (MH) remit. One hundred and eleven participants, aged from 16 to 60 years, contributed to discussions. RESULTS: Perpetuation of stigma, autonomy and decision-making were central themes as both enablers and deterrents of successful transition. The tension between professional (and at times parental) paternalism and young persons' growing autonomy was well captured in the themes; (a) desired practice, (b) who should decide, (c) the process of decision-making and (d) potential harm(s). CONCLUSIONS: This study provides insight into the ethical values, particularly autonomy and collaboratively working, which people expect to underpin the transition between CAMHS and AMHS. KEY PRACTITIONER MESSAGE: Engaging young people early in making decisions about their future care can enhance trust between practitioner and the young person. In addition to diagnosis, a number of factors (such as moving home; waiting lists and stigma) may need to be taken into account when considering the direction of future health care. When possible, alternatives to AMHS should be considered if considered by the young person to be a less-stigmatising treatment option.

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

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.

Improving mental health pathways and care for adolescents in transition to adult services (IMPACT): a retrospective case note review of social and clinical determinants of transition.

BACKGROUND: Poor transitions to adult care from child and adolescent mental health services may increase the risk of disengagement and long-term negative outcomes. However, studies of transitions in mental health care are commonly difficult to administer and little is known about the determinants of successful transition. The persistence of health inequalities related to access, care, and outcome is now well accepted including the inverse care law which suggests that those most in need of services may be the least likely to obtain them. We sought to examine the pathways and determinants of transition, including the role of social class. METHOD: A retrospective systematic examination of electronic records and case notes of young people eligible to transition to adult care over a 4-year period across five Health and Social Care NHS Trusts in Northern Ireland. RESULTS: We identified 373 service users eligible for transition. While a high proportion of eligible patients made the transition to adult services, very few received an optimal transition process and many dropped out of services or subsequently disengaged. Clinical factors, rather than social class, appear to be more influential in the transition pathway. However, those not in employment, education or training (NEET) were more likely (OR 3.04: 95% CI 1.34, 6.91) to have been referred to Adult Mental Health Services (AMHS), as were those with a risk assessment or diagnosis (OR 4.89: 2.45, 9.80 and OR 3.36: 1.78, 6.34), respectively. CONCLUSIONS: Despite the importance of a smoother transition to adult services, surprisingly, few patients experience this. There is a need for stronger standardised policies and guidelines to ensure optimal transitional care to AMHS. The barriers between different arms of psychiatry appear to persist. Joint working and shared arrangements between child and adolescent and adult mental health services should be fostered.

Transitioning from child and adolescent mental health services with attention-deficit hyperactivity disorder in Ireland: Case note review.

In a context of international concern about early adult mental health service provision, this study identifies characteristics and service outcomes of young people with attention-deficit hyperactivity disorder (ADHD) reaching the child and adolescent mental health service (CAMHS) transition boundary (TB) in Ireland. The iTRACK study invited all 60 CAMHS teams in Ireland to participate; 8 teams retrospectively identified clinical case files for 62 eligible young people reaching the CAMHS TB in all 4 Health Service Executive Regions. A secondary case note analysis identified characteristics, co-morbidities, referral and service outcomes for iTRACK cases with ADHD (n = 20). Two-thirds of young people with ADHD were on psychotropic medication and half had mental health co-morbidities, yet none was directly transferred to public adult mental health services (AMHS) at the TB. Nearly half were retained in CAMHS, for an average of over a year; most either disengaged from services (40%) and/or actively refused transfer to AMHS (35%) at or after the TB. There was a perception by CAMHS clinicians that adult services did not accept ADHD cases or lacked relevant service/expertise. Despite high rates of medication use and co-morbid mental health difficulties, there appears to be a complete absence of referral to publicly available AMHS for ADHD youth transitioning from CAMHS in Ireland. More understanding of obstacles and optimum service configuration is essential to ensure that care is both available and accessible to young people with ADHD.

Protocol for a cohort study of adolescent mental health service users with a nested cluster randomised controlled trial to assess the clinical and cost-effectiveness of managed transition in improving transitions from child to adult mental health services (the MILESTONE study).

INTRODUCTION: Disruption of care during transition from child and adolescent mental health services (CAMHS) to adult mental health services may adversely affect the health and well-being of service users. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare) study evaluates the longitudinal course and outcomes of adolescents approaching the transition boundary (TB) of their CAMHS and determines the effectiveness of the model of managed transition in improving outcomes, compared with usual care. METHODS AND ANALYSIS: This is a cohort study with a nested cluster randomised controlled trial. Recruited CAMHS have been randomised to provide either (1) managed transition using the Transition Readiness and Appropriateness Measure score summary as a decision aid, or (2) usual care for young people reaching the TB. Participants are young people within 1 year of reaching the TB of their CAMHS in eight European countries; one parent/carer and a CAMHS clinician for each recruited young person; and adult mental health clinician or other community-based care provider, if young person transitions. The primary outcome is Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) measuring health and social functioning at 15 months postintervention. The secondary outcomes include mental health, quality of life, transition experience and healthcare usage assessed at 9, 15 and 24 months postintervention. With a mean cluster size of 21, a total of 840 participants randomised in a 1:2 intervention to control are required, providing 89% power to detect a difference in HoNOSCA score of 0.30 SD. The addition of 210 recruits for the cohort study ensures sufficient power for studying predictors, resulting in 1050 participants and an approximate 1:3 randomisation. ETHICS AND DISSEMINATION: The study protocol was approved by the UK National Research Ethics Service (15/WM/0052) and equivalent ethics boards in participating countries. Results will be reported at conferences, in peer-reviewed publications and to all relevant stakeholder groups. TRIAL REGISTRATION NUMBER: ISRCTN83240263; NCT03013595 (pre-results).

Transitioning care-leavers with mental health needs: 'they set you up to fail!'

BACKGROUND: Children in the UK care system often face multiple disadvantages in terms of health, education and future employment. This is especially true of mental health where they present with greater mental health needs than other children. Although transition from care - the process of leaving the local authority as a child-in-care to independence - is a key juncture for young people, it is often experienced negatively with inconsistency in care and exacerbation of existing mental illness. Those receiving support from child and adolescent mental health services (CAMHS), often experience an additional, concurrent transfer to adult services (AMHS), which are guided by different service models which can create a care gap between services. METHOD: This qualitative study explored care-leavers' experiences of mental illness, and transition in social care and mental health services. Twelve care-leavers with mental health needs were interviewed and data analysed using framework analysis. RESULTS: Sixteen individual themes were grouped into four superordinate themes: overarching attitudes towards the care journey, experience of social care, experience of mental health services and recommendations. CONCLUSIONS: Existing social care and mental health teams can improve the care of care-leavers navigating multiple personal, practical and service transitions. Recommendations include effective Pathway Planning, multiagency coordination, and stating who is responsible for mental health care and its coordination. Participants asked that youth mental health services span the social care transition; and provide continuity of mental health provision when care-leavers are at risk of feeling abandoned and isolated, suffering deteriorating mental health and struggling to establish new relationships with professionals. Young people say that the key to successful transition and achieving independence is maintaining trust and support from services.

Recommendations for the transition of patients with ADHD from child to adult healthcare services: a consensus statement from the UK adult ADHD network.

The aim of this consensus statement was to discuss transition of patients with ADHD from child to adult healthcare services, and formulate recommendations to facilitate successful transition. An expert workshop was convened in June 2012 by the UK Adult ADHD Network (UKAAN), attended by a multidisciplinary team of mental health professionals, allied professionals and patients. It was concluded that transitions must be planned through joint meetings involving referring/receiving services, patients and their families. Negotiation may be required to balance parental desire for continued involvement in their child's care, and the child's growing autonomy. Clear transition protocols can maintain standards of care, detailing relevant timeframes, responsibilities of agencies and preparing contingencies. Transition should be viewed as a process not an event, and should normally occur by the age of 18, however flexibility is required to accommodate individual needs. Transition is often poorly experienced, and adherence to clear recommendations is necessary to ensure effective transition and prevent drop-out from services.

Transition to adult services for young people with mental health needs: A systematic review.

BACKGROUND: Young people's transition from child and adolescent (CAMHS) to adult mental health services (AMHS). OBJECTIVES: To systematically review evidence on the effectiveness of different models of CAMHS-AMHS transitional care, service user and staff perspectives, and facilitators of/barriers to effective CAMHS-AMHS transition. DATA SOURCES: A systematic search in May 2012 of Medline, PsycINFO, CINAHL, EMBASE, AMED, Health Business Elite, HMIC, Cochrane Database, Web of Science and ASSIA; ancestral searches; and consultation with experts in the field. STUDY SELECTION: Qualitative, quantitative and mixed-methods primary research on the CAMHS-AMHS health-care transition of young people (aged 16-21 years) with mental health problems. DATA EXTRACTION: Two reviewers independently completed a standardised data extraction form and critically evaluated identified documents using a validated appraisal tool for empirical studies with varied methodologies. RESULTS: A total of 19 studies of variable quality were identified. None were randomised or case-controlled trials. Studies incorporating service user/carer perspectives highlighted the need to tackle stigma and provide accessible, age-appropriate services. Parents/carers wanted more involvement with AMHS. Transitional care provision was considered patchy and often not prioritised within mental health services. There was no clear evidence of superior effectiveness of any particular model. CONCLUSIONS: High-quality evidence of transitional care models is lacking. Data broadly support the development of programmes that address the broader transitional care needs of 'emerging adults' and their mental health needs but further evaluation is necessary. Developing robust transitional mental health care will require the policy-practice gap to be addressed and development of accessible, acceptable, responsive, age-appropriate provision.

Demands, control, supportive relationships and well-being amongst British mental health workers.

PURPOSE: Staff well-being is considered to be a potential problem within mental health occupations, and its variability is in need of investigation. Our starting point is to assess the role of demands, control and supportive relationships that are at the core of Karasek's model. The study aims to assess the relationship amongst mental health workers of job demands, control and support (from peers and superiors) with multiple measures of well-being. METHOD: Data were obtained through a self-completion questionnaire from mental health staff in 100 inpatient wards, 18 crisis resolution/home treatment teams and 18 community mental health teams. The data was analysed using multilevel regression analysis. RESULTS: Job demands (negatively), control (positively) and supportive relationships (positively) are each uniquely associated with the five measures of well-being included in the study: namely intrinsic satisfaction, anxiety, depression, emotional exhaustion and personal accomplishment. Non-linear and interaction effects involving these demands, control and supportive relationships are found, but vary in type and strength across well-being measures. CONCLUSIONS: The combination of low levels of demands and high levels of control and supportive relationships is good for the well-being of mental health staff. Our results suggest that management initiatives in mental health services should be targeted at creating this combination within the working environment, and particularly at increasing levels of job control.