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THE MILESTONE PROJECT: Managing the Link and Strengthening Transition from Child to Adult Mental Health Care

Periodic Report Summary 3 - MILESTONE (THE MILESTONE PROJECT: Managing the Link and Strengthening Transition from Child to Adult Mental Health Care)

Project Context and Objectives:
Transition to adulthood is the period of onset of most of the serious mental disorders that disable or kill in adult life. Current service configuration of distinct Child and Adolescent Mental Health (CAMHS) and Adult Mental Health (AMHS) Services is considered the weakest link where the care pathway should be most robust. Transition-related discontinuity of care is a major health, socioeconomic and societal challenge for the EU. Although there is widespread concern about the clinical barriers that operate at the CAMHS-AMHS interface, we do not know the nature of the moderators and facilitators that influence transition across services. EU states vary in CAMHS and AMHS training and specialisation for clinicians, in service structures and organisation, in policy and legal aspects of adolescent care, and in care pathways for those undergoing transition. Furthermore, there are no validated and reliable measures that specifically assess the outcomes, experience and effectiveness of transitional care, and there is an assumption in research about transition that young people are always better served by moving from child to adult services. The pros and cons of continuing within mental health services remain to be elucidated by evidence and not simply become efforts aimed simply at maximising transfer rates from CAMHS to AMHS.
The MILESTONE project is an EU-wide study of transition from CAMHS to AMHS to strengthen transitional care, including appropriate discharge from services, across different healthcare systems. We will conduct a mapping exercise across all EU states to delineate current transition policies, practices and outcomes, where available, and develop and validate two clinically relevant transition-related measures. We will also conduct a longitudinal cohort study in eight countries (UK, Ireland, Belgium, Italy, Germany, Holland, France and Croatia) to understand the outcomes of transition and a cluster randomised control trial (cRCT) of an experimental intervention to improve outcomes of transition. We aim to transform services so that the current weakness in the CAMHS-AMHS care pathway is replaced by a clinically robust, cost-effective, high quality accessible care pathway for vulnerable young people with mental disorders, ensuring that those who need on-going care get it effectively. This will ensure that others with transient or remitted conditions are not ‘pathologised’ and do not receive inappropriate, unnecessary or potential harmful interventions. We will also create clinical, organisational, policy and ethical guidelines for improving care and outcomes for transition age youth; and develop and implement training packages for clinicians across EU to ensure the take-up of best practice.
The key strategic objectives of the project are to:
1. Delineate the CAMHS-AMHS interface across all EU nation states in terms of transition of care, service organisation, legal and policy imperatives, professional training and user/carer experience (WP 1).
2. Understand the process, outcomes and experience of transition from CAMHS to AMHS in diverse healthcare settings across eight countries in the EU (England, Ireland, France, Germany, Belgium, Italy, Holland, and Croatia) using a bespoke suite of measures and explore the ethical challenges of providing appropriate care to children and young people as they move to adulthood (WPs 1, 2,3,4,6).
3. In a cluster randomised trial in 8 EU countries, robustly test a model of managed transition for its clinical and cost-effectiveness in improving health, social outcomes, and transition to adult roles, as compared to treatment as usual (WPs 4-5).
4. Disseminate the knowledge acquired from these studies by developing training modules for clinicians; commissioning and policy guidelines for service providers and policy makers; and extending knowledge about transition to medical and mental health professionals, to service users and their families, and to society in general (WPs 7-8).
The project has active and intensive participation of young people, carers, advocacy groups and key stakeholders and involves two SMEs, concentris and HealthTracker.
Project Results:
We have carried out an online mapping survey of the characteristics and activities of child and adolescent mental health services (CAMHS) in all 28 EU countries. Expert(s) in each country were asked to complete two online questionnaires, one assessing the characteristics of the services, and the other focusing on transitional care. The findings showed a marked heterogeneity in CAMHS in terms of service distribution (beds, professionals, opening hours, dedicated facilities or educational services); CAMHS financing (public vs private sources); and the percentage of young people overall and new cases treated in CAMHS (Signorini et al. 2017, Lancet Psychiatry). Up to 50% of CAMHS users were considered in need of transition to AMHS; yet, in the majority of countries, only up to 30% of young AMHS service users had previous contact with CAMHS (Signorini et al 2018, European Child and Adolescent Psychiatry). In our systematic review of the literature on psychiatry training in Europe we identified three models of training in adult and child and adolescent psychiatry. Training in transition is only beginning to be considered as a topic relevant for the curricula. We have also sought the opinions of psychiatry trainees in Europe regarding transition training and the knowledge and skills required for managing transition. The survey revealed that theoretical training about transition is present in only 17% and practical transition training in only 28% of the 36 European countries included in the study. Further findings regarding psychiatry and psychology training in EU countries will be expected soon from two surveys aimed at representatives of relevant professional bodies.

Our systematic review on ethical aspects of transitional care between child- and adult-orientated health services showed that most of the few existing studies come from services for young people with complex care needs and disabilities (Paul et al 2018, BMC Medical Ethics). Concern about stigma and the perpetuation of a mental illness label into adulthood was one of the themes emerging from the focus groups with youth mental-health advocacy groups and youth representative groups in Ireland, Croatia and the UK.

A study on the psychometric properties of the Transition Readiness and Appropriateness Measure (TRAM) and the Transition Related Outcome Measure TROM, has been completed. This preliminary validation showed initial support for the clinical use of the TRAM and TROM to inform successful transitions. Definitive psychometric validation of the new instruments will happen after TRAM/TROM data collection is completed in the MILESTONE study, a longitudinal cohort study with a nested cluster randomised controlled trial (cRCT) (Singh et al. 2017, BMJ Open). The two measures are part of the online study questionnaires uploaded onto the HealthTrackerTM platform, a secure and confidential data capture system.

Recruitment of young people from CAMHS (and their parents/carers and clinicians) in eight European countries into the MILESTONE study occurred between Oct 2015 and January 2017, and we achieved our stated targets. The baseline assessment (T1) and follow-up assessments 9 and 15 months after baseline (T2 and T3) have been completed and the final assessment 24 months after baseline (T4) will be completed by the end of December 2018. T1 data shows, for example, that the length of time the young people had been attending CAMHS before entering the study differs between the countries.

The intervention of ‘managed transition’ was implemented in the experimental arm of the cRCT, completed in early 2017. The statistical analysis plan for the trial has been completed and is ready to be signed off, after which data analysis will begin. The primary outcome endpoint for the trial is T3 at 15 months. Unit costs have been collated and a multi-national health economics analysis plan prepared for analysing the cost-effectiveness of the intervention.

MILESTONE study participants from four countries are taking part in focus groups in September/October 2018, to ascertain their experiences and views on transition, especially on ethical aspects of transitional care.

Study specific guidance documents, material and a training blog have been created and are available on the MILESTONE project website (http://www.milestone-transitionstudy.eu) which also contains a new project video. The sections for young people and relatives have been updated so that MILESTONE study participants and others are kept informed of recent developments. Research assistants have taken part in a number of training sessions and refresher training on study procedures. Young project advisors from the UK and, since 2017, also from Ireland have provided constructive feedback and input regarding project activities. They have also actively engaged in planning and developing a number of public engagement activities, with an aim of informing stakeholders and the wider public of the problem of transition and the findings of the various studies running under MILESTONE.
Potential Impact:
The MILESTONE project will provide mental health services with scientifically-informed and empirically-derived evidence on the nature and magnitude of problems at the CAMHS-AMHS interface, including the ethical challenges of providing appropriate care to children and young people as they move to adulthood. It will provide a standardised structured decision making processes for identifying high-risk adolescents needing transition, the effectiveness and cost-effectiveness of which will have been tested in a cRCT. It will also result in clinical, organisational, policy and ethics guidelines for improving care and outcomes for transition age youth, and a clinical training programme for clinicians across the EU. The findings will have reliability, validity and generalizability because of data from diverse healthcare settings.
Strategy impact: Results should assist policy makers in making informed decisions that will improve youth mental health, offer an intervention for improving patient outcomes, quality of life and increase the cost-effectiveness of care, and ultimately improve health status at individual and population levels.
Research-related impact: The project will provide as-yet unavailable data on service configurations in Europe (CAMHS and AMHS), transition practices, factors facilitating or impeding transition and will help identify clinical groups at special needs of transition. It will help develop operational definitions of transition-related processes and activities, offer the rationale for action/possible solutions, and test a new method of intervention to fill the current weakness in service delivery.
Products and translatability potential: We will produce several new tools (e.g. SATMEHT, TRAM, TROM) for future research projects, and develop innovative training materials that will influence curricula for child/adolescent and adult psychiatry clinicians in European countries. The Managed Transition Model, if shown to be effective, can be disseminated across all European countries and promote change in CAMHS and AMHS.
A unique cohort and user involvement: We will have identified a very large cohort of prospectively identified and longitudinally assessed young people with emerging mental disorders, available for long-term outcome and interventions studies. It will also foster the collaboration of MILESTONE researchers with national representatives of user associations, health policy planners, service users, advocacy groups and mental health charities.
Policy impact: The project can promote a substantial reorganisation of CAMHS and AMHS across the EU and strengthen the weak link between CAMHS and adult care. Youth mental health policy at national, regional and local level will be influenced by our results, with our findings helping to build an evidence base on which to organise services congruent with emerging clinical evidence about age of onset of mental disorders, user and carer needs, and service acceptability and availability. This project will introduce new ideas that will influence the nature and substance of wider policy discourse in mental health services, and may influence transition in other areas such as from adult to elderly care.
Service impacts: Our findings can lead to a profound reorganisation of CAMHS and AMHS, which in turn will improve the overall mental health care of young people. The project will facilitate the adoption of research findings and health technologies by health service providers, promote adherence to research-informed policies and guidelines, and will address barriers to the use of research-informed interventions in the transition pathway. It will highlight the potential and actual barriers to effective transition, including inflexible organisational workflows, inadequate resources and staff training as well as staff and patient attitudes and beliefs.
Quality of care: Our research can lead to improvements in quality of mental health care including efficacy of mental health interventions, availability and accessibility of services, for example in terms of quality and cultural appropriateness.
Health systems and services management: Our project will promote change in health systems management and administration. It will highlight the undeniable need of a close collaboration between CAMHS and AMHS.
Cost-containment and cost-effectiveness: Information on the cost-effectiveness of the Managed Transition Model and research-related changes in health systems in terms of both expenditure and related health outcomes, will lead to recommendations for service planning and delivery, accompanied by precise cost estimates.

List of Websites:
www.milestone-transitionstudy.eu