Periodic Report Summary 4 - 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 (Tuomainen et al. 2018, BMC Psychiatry). 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 had active and intensive participation of young people, carers, advocacy groups and key stakeholders and involves two SMEs, concentris and HealthTracker.
Project Results:
WP01 found huge variation between EU states on service provision which could not be explained by differences in epidemiology or disease burden. Written transition policies existed on only 4/28 EU states and in 82% of EU states, young people felt that lack of connection between CAMHS and AMHS contributed to transition problems.
In WP02 we developed two measures to enable more purposeful transition: TRAM (Transition Readiness and Appropriateness Measure) and TROM (Transition Related Outcome Measure). TRAM and TROM were validated in two separate studies and final versions translated into all relevant languages (English, French, Flemish, Italian German, Dutch and Croatian).
WP03 was a longitudinal cohort study to determine different transitional trajectories and mental health outcomes. We recruited 52 CAMHS clusters of which 39 clusters were allocated to the longitudinal study in WP03 (n= 763). Over the two-year follow-up period, almost a quarter continued in specialist mental healthcare (Continuity Trajectory); for half, care was discontinued from nine-months onwards (Discontinuity Trajectory), for a fifth from later follow-up periods onwards (Partial Continuity Trajectory). Less than one in ten accessed specialist mental healthcare after a period of interrupted care (Interrupted trajectory). Most young people did not transition to AMHS; only one in five were referred to AMHS and of those who did, approximately half received care in AMHS.
WP04 was a cluster randomised trial of our Managed Transition Model. Of those randomised to participate in the RCT, 13 clusters were in the Managed transition group and 27 in the TAU group. Baseline demographic (age, gender, ethnicity, socioeconomic status, living arrangements) characteristics of young people in the Managed transition and TAU groups were fairly well balanced. However, young people in the Managed transition (intervention) group were slightly more unwell than those in the TAU group. HoNOSCA-CR scores improved significantly in all young people during the study period, but there was no difference between the trial arms at 15 months. However, the rate of decline in HoNOSCA-CR scores was much more rapid in the Managed Transition group; i.e. they improved faster.
In WP05 we conducted a health economic analysis of our trial intervention. Across all countries total health care cost fell over time in both intervention and control arms. The cost of the intervention itself was relatively small (on average approximately €54 per patient), and dwarfed by the costs associated with those experiencing inpatient care (over €1800 per young person on average).
In WP06 we explored the ethical challenges of ensuring delivery of transitional care. Our findings show that many young people in the MILESTONE study who reached the transition boundary of their CAMHS and who were not referred to AMHS felt they lacked information and wished for a ‘safety net’ after discharge.
WP07 dealt with study dissemination, with integral input from young study advisers. We created a study website, produced information leaflets, circulated regular study newsletters, created a publication plan, and organised presentations at international scientific conferences. With input from our young project advisors, we have also produced a lasting legacy –MILESTONE films detailing their experiences of care and transition.
In WP8 we conducted a systematic review of the structure and content of psychiatric training in child and adult psychiatry across EU. We developed training modules for different audiences (e.g. students and health professionals, stakeholders, parents and carers) addressing topics relevant for transition planning. These modules are available upon request and can be downloaded from the MILESTONE website.
WP09 was related to overall Project Management.
Potential Impact:
The MILESTONE project has provided EU 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 has produced two 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: 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 have produced 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 can be disseminated across all European countries and promote change in CAMHS and AMHS.
A unique cohort and user involvement: We 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.
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.
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. It has highlighted 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 findings should 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 shows that it is a relatively inexpensive intervention that allows for structured decision making, and hence be cost-effective.
List of Websites:
www.milestone-transitionstudy.eu
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 (Tuomainen et al. 2018, BMC Psychiatry). 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 had active and intensive participation of young people, carers, advocacy groups and key stakeholders and involves two SMEs, concentris and HealthTracker.
Project Results:
WP01 found huge variation between EU states on service provision which could not be explained by differences in epidemiology or disease burden. Written transition policies existed on only 4/28 EU states and in 82% of EU states, young people felt that lack of connection between CAMHS and AMHS contributed to transition problems.
In WP02 we developed two measures to enable more purposeful transition: TRAM (Transition Readiness and Appropriateness Measure) and TROM (Transition Related Outcome Measure). TRAM and TROM were validated in two separate studies and final versions translated into all relevant languages (English, French, Flemish, Italian German, Dutch and Croatian).
WP03 was a longitudinal cohort study to determine different transitional trajectories and mental health outcomes. We recruited 52 CAMHS clusters of which 39 clusters were allocated to the longitudinal study in WP03 (n= 763). Over the two-year follow-up period, almost a quarter continued in specialist mental healthcare (Continuity Trajectory); for half, care was discontinued from nine-months onwards (Discontinuity Trajectory), for a fifth from later follow-up periods onwards (Partial Continuity Trajectory). Less than one in ten accessed specialist mental healthcare after a period of interrupted care (Interrupted trajectory). Most young people did not transition to AMHS; only one in five were referred to AMHS and of those who did, approximately half received care in AMHS.
WP04 was a cluster randomised trial of our Managed Transition Model. Of those randomised to participate in the RCT, 13 clusters were in the Managed transition group and 27 in the TAU group. Baseline demographic (age, gender, ethnicity, socioeconomic status, living arrangements) characteristics of young people in the Managed transition and TAU groups were fairly well balanced. However, young people in the Managed transition (intervention) group were slightly more unwell than those in the TAU group. HoNOSCA-CR scores improved significantly in all young people during the study period, but there was no difference between the trial arms at 15 months. However, the rate of decline in HoNOSCA-CR scores was much more rapid in the Managed Transition group; i.e. they improved faster.
In WP05 we conducted a health economic analysis of our trial intervention. Across all countries total health care cost fell over time in both intervention and control arms. The cost of the intervention itself was relatively small (on average approximately €54 per patient), and dwarfed by the costs associated with those experiencing inpatient care (over €1800 per young person on average).
In WP06 we explored the ethical challenges of ensuring delivery of transitional care. Our findings show that many young people in the MILESTONE study who reached the transition boundary of their CAMHS and who were not referred to AMHS felt they lacked information and wished for a ‘safety net’ after discharge.
WP07 dealt with study dissemination, with integral input from young study advisers. We created a study website, produced information leaflets, circulated regular study newsletters, created a publication plan, and organised presentations at international scientific conferences. With input from our young project advisors, we have also produced a lasting legacy –MILESTONE films detailing their experiences of care and transition.
In WP8 we conducted a systematic review of the structure and content of psychiatric training in child and adult psychiatry across EU. We developed training modules for different audiences (e.g. students and health professionals, stakeholders, parents and carers) addressing topics relevant for transition planning. These modules are available upon request and can be downloaded from the MILESTONE website.
WP09 was related to overall Project Management.
Potential Impact:
The MILESTONE project has provided EU 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 has produced two 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: 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 have produced 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 can be disseminated across all European countries and promote change in CAMHS and AMHS.
A unique cohort and user involvement: We 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.
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.
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. It has highlighted 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 findings should 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 shows that it is a relatively inexpensive intervention that allows for structured decision making, and hence be cost-effective.
List of Websites:
www.milestone-transitionstudy.eu