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

Periodic Report Summary 1 - 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 developed two measures for assessing CAMHS and transition-related service characteristics for adolescents in treatment for any mental disorders or any alcohol or substance abuse disorder: the European CAMHS Mapping Questionnaire (ECM-Q) and the Standardized Assessment Tool for Mental Health Transition (SATMEHT). We have collected data from all 28 European countries with online versions of these tools. Further qualitative data on transition policies and service interfaces in 14 European countries has been obtained from experts. We have also conducted a literature review and survey on psychiatry training, the latter in the eight MILESTONE participating countries.

Using existing literature, expert input and focus groups (including users and carers), we have developed two transition-related measures: the Transition Readiness and Appropriateness Measure (TRAM), which helps identify high-risk, high-need cases for whom transition to AMHS is critical; and the Transition related Outcome Measure (TROM), which assesses the experience, outcomes, and effectiveness of transitional care. We have developed versions for young people, parent/carers and clinicians in five languages, and these have been user-tested and uploaded, together with other study measures, onto the HealthTrackerTM platform, a secure and confidential data capture system. The validation phase of TRAM and TROM is ongoing.

We have completed a systematic literature review on ethical aspects of transitional care between child- and adult-orientated health services, and conducted focus groups with youth mental-health advocacy groups and youth representative groups in Ireland, Croatia and the UK. We have developed an ‘Ethics of transition’ questionnaire based on the findings of the focus groups.

We have developed a protocol for the longitudinal cohort study and cluster randomised controlled trial (cRCT) together with over 30 master documents, which have been and approved by research ethics committees in the eight countries. These contain detailes description of the intervention and the assessment battery, have been optimised, translated and adapted for HealthTracker™ and are ready for assessments at four time points (T1, T2, T3 and T4). We have received constructive feedback and input from young project advisors throughout the development of the study. The trial has been registered with the ISRCTN.

Baseline service level data has been collected in recruited CAMHS services in all countries, which have been randomised, resulting in a total of 49 clusters, with 13 clusters (target recruitment of 290) in the intervention and 36 (target recruitment of 770) in the control or cohort arm of the study (total target recruitment 1060). Patient identification is under way in most CAMHS clusters, with recruitment scheduled from 1st October 2015. Study specific guidance documents, material and a training blog have been created and are available on the MILESTONE project website. Research assistants have taken part in five training sessions on study procedures.

We have refined the ‘model of managed transition’ intervention for the cRCT, the main component of which is feedback to clinicians from the structured assessment, TRAM, completed by young person, parent/carer and clinician approximately six months before the service boundary. The TRAM summary score report will be accompanied by the “MILESTONE Transition leaflet” on good quality transition. In case the young person needs further care, clinicians will be expected to include these in the referral letter. Clinicians in the experimental clusters have been provided with information about the TRAM and the way in which it can help with good quality transitions.

We have developed a Client Service Receipt Inventory, adapted for collecting resource use data in each of the countries, and identified the EUROQOL EQ-5D as the most suitable instrument for health economic analysis in the trial.

In order to facilitate and improve dissemination to various stakeholders we have developed a MILESTONE website, which has special pages for each stakeholder group, and published it online: http://www.milestone-transitionstudy.eu. The sections for young people and relatives have been translated into five languages so that study participants can inform themselves about the aims of the MILESTONE project.

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