Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology

Managing the link and strengthening transition from child to adult mental health Care in Europe... Background: Transition from distinct Child and Adolescent Mental Health (CAMHS) to Adult Mental Health Services (AMHS) is beset with multitude of problems affecting continuity of care for young people with mental health needs. Transition-related discontinuity of care is a major health, socioeconomic and societal challenge globally. The overall aim of the Managing the Link and Strengthening Transition from Child to Adult Mental Health Care in Europe (MILESTONE) project (2014–19) is to improve transition from CAMHS to AMHS in diverse healthcare settings across Europe. MILESTONE focuses on current service provision in Europe, new transition-related measures, long term outcomes of young people leaving CAMHS, improving transitional care through ‘managed transition’, ethics of transitioning and the training of health care professionals. Methods: Data will be collected via systematic literature reviews, pan-European surveys, and focus groups with service providers, users and carers, and members of youth advocacy and mental health advocacy groups. A prospective cohort study will be conducted with a nested cluster randomised controlled trial in eight European Union (EU) countries (Belgium, Croatia, France, Germany, Ireland, Italy, Netherlands, UK) involving over 1000 CAMHS users, their carers, and clinicians. Discussion: Improving transitional care can facilitate not only recovery but also mental health promotion and mental illness prevention for young people. MILESTONE will provide evidence of the organisational structures and processes influencing transition at the service interface across differing healthcare models in Europe and longitudinal outcomes for young people leaving CAMHS, solutions for improving transitional care in a cost-effective manner, training modules for clinicians, and commissioning and policy guidelines for service providers and policy makers. Trial registration: “MILESTONE study” registration: ISRCTN ISRCTN83240263 Registered 23 July 2015; ClinicalTrials.gov NCT03013595 Registered 6 January 2017. Keywords: Mental health, Child and adolescent mental health services, Transition, Health services research, Cluster randomised controlled trial, Longitudinal cohort study, Youth mental health, Policy, Professional training, Europe * Correspondence: helena.tuomainen@warwick.ac.uk H. Tuomainen and U. Schulze contributed equally to this work. Mental Health and Wellbeing, Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 2 of 11 Background disorders and those with emerging mood, psychotic, The journey into adult life is a time of profound physio- personality-related or substance abuse disorders slip logical, psychological and social change for young people through the care net at the transition boundary [29, [1, 2]. Young people are expected to take responsibility 45–48]. With insufficient support in place, many disen- for themselves, make their own decisions and become fi- gage from mental health services altogether only to nancially independent [3]. Late adolescence is also a high present to adult services subsequently, with more severe risk period for the emergence of mental disorders, alco- and enduring mental health problems [24, 49, 50]. Such hol and substance abuse and risk taking behaviour [1, 4, occurrences may have been prevented or better con- 5]. Overall rates of mental health problems in young trolled had better transition arrangements been in place. people increase with age, problems become more com- Young people who undergo a planned and purposeful plex, and emerging disorders, such as psychosis and per- transition process that addresses their psychosocial and sonality disorders, develop [6]. Moreover, mental medical needs, experience an improvement in their disorders in adolescence predict mental health problems mental health and functioning [29, 47]. Yet, due to a in adulthood [7–9]. 50% of mental health problems policy-practice gap [28], few of those who do transition emerge by the age of 16 years and 75% by the age of 24 from CAMHS to AMHS experience ‘optimal transition’, [10, 11]. Intervening early when mental disorders which has been characterised by a period of parallel care emerge, such as in psychosis, can reduce their severity between CAMHS and AMHS, at least one transition and persistence and yield positive outcomes [12, 13]. planning meeting, adequate information transfer and Unsatisfactory care carries a risk of illness extension, continuity of care [27]. Studies carried out in the Repub- progression and chronicity, which has multiple adverse lic of Ireland [23, 51] and France [52] suggest that prob- effects, including on psychosocial functioning and lems of the same nature and magnitude at the self-determination [14, 15]. Yet only a small proportion CAMHS-AMHS interface are occurring in other of young people with mental health problems, less than European countries. This poses a major health, socioeco- one in six, access services or receive appropriate care nomic and societal challenge for the care and wellbeing [16–18]. All over Europe, those with persisting mental of young people with mental health needs within the health needs usually move from Child and Adolescent European Union (EU), which is exacerbated by the dif- Mental Health Services (CAMHS) to Adult Mental ferent mental health care service structures and Health Services (AMHS) around the critical age of 16– provision in the member states [53–55]. The develop- 18 years. However, ideological, structural, functional and ment of solutions is made harder by the lack of system- organisational differences between CAMHS and AMHS atic and robust evidence on the nature and severity of hamper this transition [19–29]. The disruption of care transition-related problems across the differing health to young people at the CAMHS-AMHS interface, and care contexts in Europe and on their impact upon the the long-term adverse effects on their health, wellbeing health and wellbeing of young people. and potential is of concern worldwide [1, 8, 30–32]. The transitions literature often uses words such as The importance of improving young people’s transi- ‘lost’ [56, 57], ‘divide’ [41] and ‘gap’ [51] to describe what tion from child-orientated to adult-orientated health ser- happens to young people or the care of young people at vices has been recognised since the early 1990s [33]. For the CAMHS-AMHS interface. Different models of tran- about a decade, such transition was discussed but rarely sitional mental health care for young people have been studied [34]. In the 2000s, transitions research in paedi- developed to maintain continuity of care, but recent sys- atric services increased [35], professional consensus tematic reviews show few adequately powered studies, statements were developed [36, 37] and national policy randomised controlled trials or case-controlled studies recognising the importance of transition started to evaluating their effectiveness [19, 58, 59]. The protocol emerge [38]. During this decade the importance of youth and reciprocal agreement model of transitional care, mental health [39] and improving transitions between prevalent in the United Kingdom, suffers from a policy– CAMHS and AMHS started to be highlighted [24, 40, practice disconnection [29] and organisational differ- 41]. Research on transition experiences of young people ences between CAMHS and AMHS [22, 60]; transition with mental health problems started to be published, programme models, more prevalent in the United States, from sources in the USA in the early 2000 (e.g. [42, 43]) tend to be difficult to roll out state-wide and have not and later in the decade from the United Kingdom (UK) been attempted nation-wide [61–63]. No studies have [44]. The transitions of care from child and adolescent evaluated the shared management framework model mental health services to adult mental health services [57]. It is also not clear how much of the published re- (TRACK) study [28, 29] and other research show that search was informed by patient and public involvement many young people with established mental health prob- at the design stage, rather than research studying the lems, such as neurodevelopmental and conduct views of service users and their parents/carers. The Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 3 of 11 quality of research into the ethical aspects of mental Transition Related Outcome Measure (TROM), to health transitions is poor in general [58] and the ethics aid clinicians’ decision-making and stimulate shared of assuming transition to adult services is the ideal has decision-making together with young people and been questioned by reviewers of papers and researchers their parents (WP2); because of possible risks associated with pathologising iii) tracking the journey and outcomes of young people transient and self-limiting distress and dysfunction, as they move out of CAMHS in a prospective which may be normal during adolescence. cohort study in the eight MILESTONE countries* The five year (2014–19) European Union-funded (WP3); Managing the Link and Strengthening Transition from iv) assessing the effectiveness of a ‘managed transition’ Child to Adult Mental Health Care (MILESTONE) pro- model based on the TRAM in a nested cluster ject (grant number 602442) will create a rich evidence randomised controlled trial (cRCT) within the base on transitional mental health care in Europe. Work prospective cohort* (WP4); is subdivided into several high-quality work packages fo- v) determining the cost-effectiveness of the model of cusing on different key aspects of research, bringing to- ‘managed transition’* (WP5); gether a European consortium of researchers. vi) exploring ethical aspects of transitional care via qualitative and quantitative methods (WP6); Objectives of MILESTONE vii) understanding and further developing professional The overall aim of MILESTONE is to study transition and clinical training models in CAMHS and AMHS from CAMHS to AMHS within the EU and to addressing service transition via a systematic review strengthen transitional care across different healthcare and surveys (WP8). systems. The key strategic objectives are to: *Together, these work packages constitute the 1. Delineate the CAMHS-AMHS interface across all “MILESTONE study”. EU nation states in terms of transition of care, The main deliverables for the EU for each work pack- service organisation, legal and policy imperatives, age are listed in Additional file 2. professional training and user/carer experience. Overview and geographical reach of the research projects 2. Understand the processes, outcomes and carried out within MILESTONE are illustrated in Fig. 1. experiences of transition from CAMHS to AMHS in healthcare settings across eight countries Methods/design (Belgium, Croata, France, Germany, Ireland, Italy, WP 1: Mapping the CAMHS-AMHS interface across the Netherlands, and the UK) in the EU, using a European mental health services bespoke suite of measures and to develop an ethical The aim of this work package is to analyse the clinical, framework for providing appropriate care to organisational and legal aspects of CAMHS-AMHS adolescents as they move to adulthood. interface at national and regional levels across all 28 3. Robustly test a model of ‘managed transition’ for its EU states. The mapping exercise will help identify tran- clinical and cost-effectiveness in improving health sition policies and models in different EU healthcare and social outcomes and transition to adult health and social settings, and clarify how and by whom deci- services, as compared to treatment as usual. sions about transition are made within each national 4. Disseminate this evidence by developing training mental health system. A futher aim is to examine tran- modules for clinicians, and commissioning and sition in other health areas and social services in the policy guidelines for service providers and policy different European countries. makers; and extending knowledge about transition A list of European governmental and non-governmental to mental health professionals, to service users and associations able to provide data on CAMHS/AMHS their families, and to society in general. interface and transition was collated. Two measures were developed in English for completion online via a MILESTONE research dedicated web domain by country experts – child MILESTONE comprises seven freestanding research psychiatrists and representatives of national child- projects, which are organised into work packages (WP) psychiatry associations – within each of the 28 EU (see Additional file 1): member states: 1) the European CAMHS Mapping Questionnaire (ECM-Q), which was based on the i) mapping the CAMHS-AMHS interface and European Service Mapping Schedule [64]and inte- transition in all EU states via surveys (WP1); grated many of the domains used WHO CAMHS Atlas ii) developing two measures, the Transition Readiness [65]; and 2) the Standardized Assessment Tool for and Appropriateness Measure (TRAM) and the Mental Health Transition (SATMEHT), which was Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 4 of 11 Fig. 1 Research projects within MILESTONE. Green hexagons: research involving the eight MILESTONE countries only. Grey hexagons: research involving all European countries developed from an instrument used in the TRACK disregard of conflicting information, and misperceptions study [29] and other questionnaires [34, 43, 66, 67]. of other/adult services [70, 71]. So far a planned, pur- For the ECM-Q, the primary aim was to characterise poseful and needs-based assessment of those who reach child and adolescent mental health care provision across the transition boundary does not exist. Furthermore, countries (e.g. number of CAMHS per 100,000 young there are no validated and reliable measures that specif- people), including collaboration with other services, ac- ically assess the experience, outcomes, and effectiveness tivity data and funding sources. For the SATMEHT, the of mental health transitional care. primary aim was to characterise the transition process The aim of this work package was therefore to create a and services configuration per country (e.g. proportion low-burden, reliable and efficient suite of measures re- of young people attending CAMHS needing a transition lated to transitioning from CAMHS to AMHS, one for to AMHS), including the availability of policies regulat- assessing the young person’s readiness and appropriate- ing the CAMHS-AMHS interface and the degree of ness for transition, and the other for measuring out- stakeholders’ involvement. More detailed methodology comes linked with transition. The Transition Readiness and findings from the ECM-Q and SATMEHT have and Appropriateness Measure (TRAM) is a clinician been reported elsewhere [68, 69]. support and assessment tool designed to identify high-risk, high-need young people for whom transition WP 2: Development and monitoring using the MILESTONE to AMHS is critical. The Transition Related Outcome suite of measures Measure (TROM) assesses the quality and outcome of Ideally all young people who reach the CAMHS-AMHS transition, and includes most domains present in the transition boundary should be assessed in a structured TRAM, allowing for comparison of results over time. and standardised way to determine ongoing need for Most questions in the TRAM and TROM are asked of care [32]. Feeding back structured assessment results to all respondent types (young person, parent/carer and clinicians can lead to improved clinical decision making clinician); some are relevant only to the clinician and [70]. Clinical judgements made under time and resource others only to the young person and parent/carer. The constraints are affected by diagnostic and cognitive TRAM forms the basis of ‘managed transition’, as de- biases, assumptions based on patient background, a scribed below. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 5 of 11 TRAM and TROM were developed using qualitative identifying those with on-going care need, a transition and quantitative methods following the US FDA model including such an approach is not available, Guidance for Patient-reported Outcome Measures [72]. although its need has been articulated [74, 75]. Literature was critically reviewed for item/concept iden- We developed the ‘MILESTONE study’ to capture tification, and three waves of focus groups on item/con- this missing information [76]. In this ongoing study we cept elicitation were carried out involving young people recruit and prospectively follow a large cohort of over with experience of CAMHS, their parents/carers and 1000 young people approaching the CAMHS-AMHS mental health professionals at two mental health NHS transition boundary in the participating EU countries. trusts in the UK. Based on the analysis of the data thus The cohort study aims to evaluate the young people’s obtained, items were formed into scales and subjected to mental health, quality of life and functioning while still user testing so that problems with the format and com- at CAMHS, and identify predictors of transitional tra- pletion issues could be identified. The final versions jectories, experiences and mental health outcomes over were translated into French, Italian, German, Dutch and a follow-up period of two years. Nested within this co- Croatian. Participant-optimised web-based versions were hort study is a cluster randomised controlled trial developed using HealthTracker™ (https://www.health- (cRCT) testing whether the implementation of the tracker.co.uk/), a web-based portal which allows mea- model of managed transition in CAMHS at the transi- sures to be completed remotely and which has been tion boundary improves the mental health and social used in other EU FP7 projects [73]. The construct valid- outcomes of young people and their transition to adult ity, content validity, inter-rater reliability, test-retest reli- roles when they move on from CAMHS, as compared ability, and sensitivity to change of TRAM and TROM with usual care. ‘Managed transition’ includes feedback were assessed in a sub-study conducted in the eight to clinicians from the TRAM assessment. In the inter- MILESTONE countries, involving young people with ex- vention arm clusters, clinicians are provided with perience of CAMHS, parents/carers/spouses, and mental TRAM Score summary reports for the young people health professionals. The development, psychometric participating in the study. Clinicians are advised to dis- testing and implementation of TRAM and TROM will cuss the report with the young person and parent/carer, be presented in separate publications. include relevant points in a transitional care plan, and The “TRAM score summary report” brings together to attach it to the referral letter, if further care is indi- the TRAM scores from the young person, parent/carer cated. Young people in the control clusters receive and CAMHS clinician with graphs visualising differences treatment as usual, which depends on service and may or similarities in responses. The report, which is de- or may not include transition planning. signed as a decision support tool, contains items that are The cohort study and cRCT share recruitment and relevant to clinicians’ transition decisions (symptoms, data collection. Detailed information about eligibility risk factors and disruption experienced by the young criteria and methodology have been described else- person) and those that can facilitate a smooth transition. where [76]. The primary outcome for the trial is mental It is intended as a quick and efficient method of display- health and social functioning status as measured by the ing all information relevant to transition decisions in a Health of the Nation Outcome Scale for Child and user-friendly, relevant and accessible format, allowing Adolescents (HoNOSCA) at 15 months after baseline key facts to be easily transferred to care plans and refer- [77–79]. The measure is completed by a trained MILE- rals. The report forms the basis of ‘managed transition’ STONE research assistant by interviewing the young and its ease of use will be verified by questioning clini- person and taking into account all other available cians partaking in the MILESTONE study (see below). sources of information (parent/carer, relevant clinician and the medical records) to ensure accuracy of data [80]. The secondary outcomes are detailed in the study WP 3 & 4: The MILESTONE study: A longitudinal cohort protocol, and include transition outcomes (TROM), study of transition of care from CAMHS to AMHS and a self-reported and parent/carer reported psychopathology, nested cluster randomised control trial (cRCT) of managed emotional and behaviour problems of the service user transition in improving outcomes for young people (reported by both parent/carer and the young person him/ We do not know the longitudinal outcomes and experi- herself), illness severity, quality of life, independent ences of young people who reach the transition bound- behaviour, illness perception, barriers to care, transi- ary for CAMHS in different EU countries, with varying tion experience and readiness, and adult functioning service structures, transition ages, service provision and [76]. Data collection is the same in the intervention care. Furthermore, despite the intuitive simplicity and and control clusters. Outcomes are measured clinical importance of a care pathway which incorporates 9 months (T2), 15 months (T3) and 24 months (T4) an evidence-based decision-making process for after baseline (T1). Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 6 of 11 WP 5: Economic evaluation of the ‘managed transition’ experiences. The first two parts contribute to the develop- intervention ment of an Ethics of Transitioning questionnaire. This work package evaluates the cost-effectiveness of the The systematic review focuses on ethical aspects of tran- model of ‘managed transition’. The aim is to assess sitional care between child-orientated and adult-orientated whether the intervention conveys any benefits regarding health services in general; a more detailed methodology participant health-related quality of life and HoNOSCA and findings have been reported elsewhere [87]. scores, as well as health care usage, social care usage/so- The focus groups with members of youth advocacy cial costs and intervention costs as compared to treat- and mental health advocacy groups were carried out in ment as usual. Data collection is embedded in the the Republic of Ireland, the UK and Croatia by address- MILESTONE study [76]. ing ethical issues raised in vignettes. Each vignette de- Quality adjusted life years (QALYs) and HoNOSCA scribed a young person with a particular diagnosis and score are the two primary outcomes for the economic mental health history approaching the end of their care evaluation [77, 78]. The EQ-5D-5L [81] will be used to at CAMHS, with a decision needed to be made regard- measure Health-related quality of life (HRQL). Young ing their onward mental health treatment. The Ethics of people in the MILESTONE study compete the measure Transitioning questionnaire developed based on the at all four time points. Index scores [82] will be applied findings of the focus groups and systematic review was to calculate QALYs to ascertain the impact of the inter- included in the assessment battery of the MILESTONE vention on HRQL. The cost-effectiveness of the inter- study to retrieve young people’s views about ethical as- vention on mental health will be estimated by examining pects of transitioning from all eight countries. changes in QALYs and HONOSCA score between the The focus groups with young people and parents/ two trial arms in conjunction with the costs. The influ- carers who have participated in the MILESTONE study ence of alternative service delivery models and national will be conducted during the last assessment time point settings on cost-effectiveness will be explored. of the MILESTONE study in at least the three above Health and social care resource utilisation is the sec- countries. The aim will be to explore the actual experi- ondary outcome. The MILESTONE specific Client Ser- ences of the young people regarding services at the tran- vice Receipt Inventory (CSRI) completed at the four sition boundary, but also their views regarding the time points has been designed to help estimate the util- ethical aspects of service provision. Separate focus isation of resources. It draws on a CSRI used previously groups with a maximum of five participants will be held to estimate mental health care costs in the UK [83], but for young people and parent/carers, with a total of ap- was substantially revised for use in MILESTONE. Fur- proximately 20 young people and 10 parent/carers tak- thermore, CAMHS/AMHS in intervention sites are ing part per country. asked for specific details of the impact of the ‘managed Data from the separate arms of the ethics work pack- transition’ intervention in terms of the number of staff age will be integrated during the analysis phase, and involved in transition, their workload, and additional ser- linked up with findings from the MILESTONE study. vice resources required. WP 8: Training of professionals for improving transitional care across the EU WP 6: Ethics of transitioning Many of the profound clinical, conceptual and ideo- An enquiring ethical stance is needed in the face of an logical differences between child and adult mental health automatic assumption that transfer of care from child to service models that contribute to transitional problems adult services is necessarily ‘good’ or appropriate in all are related to psychiatry and other associated profes- cases [84–86]. Yet there is very little research on ethical sional training. For example, the CAMHS-AMHS separ- aspects of transitional care. ation and consistent differences in care philosophies has The aim of this work package is therefore to a) scrutin- allowed clinical focus to shift away from developmental ise the assumption that transition from CAMHS to psychiatry [19]. AMHS is always the best option, and b) explore the eth- The aims of this work pachage are to describe current ical/legal challenges of ensuring delivery of transitional training models used across EU for CAMHS and AMHS care to those who need it most against the risk of patholo- and to assess their contribution and impact on the or- gising transient and self-limiting distress and dysfunction, ganisation and efficacy of transitional care at the service which may be normal during adolescence. The work pack- provider level. This will be achieved by conducting a) a age has three main parts to it: a systematic review, a focus systematic review on adult and child/adolescent psych- groups with members of youth advocacy and mental iatry training and b) surveys on psychiatry and psych- health advocacy groups, and focus groups with partici- ology training. We will also develop training models and pants of the MILESTONE study with different transition guidelines for universities and policy makers according Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 7 of 11 to the results of the studies in MILESTONE in order to representatives were identified, engaged, and appropri- optimize transition between child and adult mental ately trained and supported to participate in the project health services. as consultants and steering group members. They have The systematic review focuses on two key themes: 1) provided advice on the development and refinement of the structure and content of current training across the research methodology of the MILESTONE study, Europe in general and adult psychiatry (GAP) and child tested the suite of study documents, and recommended and adolescent psychiatry (CAP) as defined by the strategies for recruitment and retention of participants. European Union of Medical Specialists (UEMS) [88]; and They also assist the various other research projects run- 2) if and how transition is addressed in any of the GAP and ning under MILESTONE, attend the SC and annual CAP training. The review covers all European countries. general meetings, and help plan and develop public en- Bespoke questionnaires have been developed for the gagement activities. In the last two years, young service surveys: The psychiatry questionnaire covers adult users from another MILESTONE country, and carer psychiatry and child and adolescent psychiartry training representatives, will be involved. The ongoing work of in Europe, with questions for both specialties on theoret- the PPI representatives was recognised in the UK by a ical and practical training, and transition as a subject. service user and carer involvement in mental health re- The questionnaire is aimed at representatives in charge search award in 2016. of specialized training in psychiatry in all EU-countries. A similar questionnaire on psychology training aimed at Dissemination representatives of national psychological associations in Effective and creative dissemination of the MILESTONE the eight MILESTONE countries has also been devel- project will be ensured throughout all its stages, from in- oped and circulated. A third survey focuses on trainees’ ception and recruitment to study results and recommen- perspectives and is conducted in collaboration with the dations to all stakeholders, including service providers, European Federation of Psychiatric Trainees. commissioners, policy makers, user and carer groups and In the analysis phase, findings will be compared and any other target groups working at the interface between integrated with the other studies running under the adolescence and adult mental health care. To date, this in- MILESTONE project, for the development of a) a training cludes a TEDx talk and a film on the theme of transition programme for transitional care and b) guidelines for har- developed through participatory workshops involving monizing CAMHS and AMHS training across the EU. MILESTONE PPI representatives and researchers. Governance, oversight committees and patient and public Discussion involvement (PPI) The MILESTONE project is to the best of our know- The MILESTONE consortium is a partnership between ledge the first of its kind in the scope and scale of re- academics and clinicians from child and adult psychiatry search focused specifically on transitions at the and psychology, researchers, voluntary services and advo- CAMHS-AMHS interface across Europe. It will provide cacy groups in eight countries. Management is through a a comprehensive yet nuanced account of the organisa- monthly steering committee (SC, i.e. trial management tion, policy, and practice of care for young people with group), comprising principal investigators from each mental health needs at the CAMHS-AMHS boundary MILESTONE country and core research staff. Practical- across the EU, and a timely analysis of their outcomes ities of the MILESTONE study are discussed at regular re- and experiences. This will help identify opportunities to search assistant (RA) teleconferences. The SC meets improve their health care outcomes, social functioning, face-to-face every six months, and the whole research and quality of life, enabling them to more easily progress team annually (General Assembly). Project management to meaningful adult roles. is provided by concentris, a small and medium-sized en- Although there are some existing service level innovations terprise specialised in the management of EU-funded pro- in Australia (ORYGEN, Melbourne https://oyh.org.au/), jects. The conduct and progress of MILESTONE as a Ireland (JIGSAW, https://www.jigsaw.ie/) and UK (Forward whole is overseen by the independent MILESTONE Thinking Birmingham, https://www.forwardthinkingbirmin Scientific, Clinical and Ethical Advisory Board (SCEAB). It gham.org.uk/) that are attempting, in their different meets annually at the General Assembly and comprises healthcare contexts, to redefine service structures for four international experts and four Patient and Public young people with mental health needs (up to 25 years), Involvement (PPI) representatives who offer advice there is still much to be done. The practice of having a and monitor the progress of the project towards its CAMHS-AMHS divide is deeply rooted in European stated aims. mental health provision and tradition. First politically MILESTONE has strong PPI embedded throughout relevant steps are being taken in some countries. In the project. Initially, five British service user Germany, for example, national specialist societies are Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 8 of 11 identifying the need for interdisciplinary cooperation Funding The MILESTONE project has received funding from the European Union’s and a “Transitional Psychiatry Task Force” has been Seventh Framework Programme for research, technological development created. It is expected that the findings of MILESTONE and demonstration under grant agreement no 602442. This paper reflects will encourage services across Europe to question their only the authors’ views and the European Union is not liable for any use that may be made of the information contained therein. The funding body has structure and identify current weaknesses in the had no role in the study design, in the writing of the protocol or in the CAMHS-AMHS care pathway so that outcomes for decision to submit the paper for publication. young people and their families can be improved by adapting best evidence-based practice into their service Authors’ contributions provision. Proposed changes to services should ensure SPS is the chief investigator who conceived the project and obtained funding, that those young people who need it receive on-going together with PS, AM, FV, GD, DW, MP, CS, JM, FM, TF, DPO, ST and US. HT is the scientific research manager and MILESTONE study coordinator who care and that others with transient or remitted condi- prepared the first draft and subsequent versions of this manuscript, and is joint tions are not ‘pathologised’ and do not receive inappro- first author with US. JW, MP, GS and SPS contributed to the manuscript. priate, unnecessary or potential harmful interventions. All authors critically reviewed the protocol and the manuscript, and gave approval for the publication. Although structural weaknesses at the CAMHS-AMHS interface have been recognised for almost 25 years [33], theevidence baseisstillweak andthe need for high Ethics approval and consent to participate quality research and common efforts at different levels The MILESTONE study protocol (covering studies in WP 3, 4, 5 and 6 focus groups) received favourable ethical opintion from West Midlands - South (across countries, involving various research organisa- Birmingham Research Ethics Committee (ref. 15/WM/0052). The Protocol for tions, professional bodies and specialist societies) re- development and e-monitoring using the MILESTONE Suite of Measures mains high. Action is needed to bring together the (covering study 2) was approved by the the NRES Committee London - Camberwell St Giles (ref. 14/LO/1049). In both instances, approvals were seemingly disparate worlds of child/adolescent and gained from equivalent ethics boards in participating countries. For WP 6 first adult mental health services and learn from other coun- round of focus groups, Saint John of God Hospitaller Services in the Republic tries about how to minimise policy-practice gaps, and of Ireland granted a favourable opinion (ref. 604/583) and these were also obtained from equivalent bodies in the UK and Croatia. improve transition procedures and outcomes. Any re- search should be informed by and involve young people who have experienced transition from CAMHS [89]. Competing interests Frank C. Verhulst is a contributing author of the Achenbach System of Empirically Based Assessments, for which he receives remuneration. Paramala Santosh is the Additional files director of HealthTacker Ltd. Additional file 1: MILESTONE work packages (WP), WP leaders and partner institutions. The table contains information about work package titles, names of the work package leaders, their institutions, and countries. Publisher’sNote (DOCX 13 kb). Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Additional file 2: MILESTONE work package deliverables for the EU. The table contains information about the deliverables linked with each Author details workpackage that have to be submitted to the EU. (DOCX 20 kb). Mental Health and Wellbeing, Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK. Department of Child and Abbreviations Adolescent Psychiatry/Psychotherapy, University of Ulm, Ulm, Germany. AMHS: Adult Mental Health Services; CAMHS: Child and Adolescent Mental Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Health Services; CI: Chief Investigator; cRCT: Cluster Randomised Controlled Coventry, UK. Coventry and Warwickshire Partnership NHS Trust, Coventry, Trial; CSRI: Client Service Receipt Inventory; EQ-5D-5L: Euroquol (quality of life UK. Department of Child and Adolescent Psychiatry and Psychology, measure); EU: European Union; HoNOSCA: Health of the Nation Outcome Erasmus Medical Center, Rotterdam, Netherlands. Department of Psychiatry, Scale for Children and Adolescents; HRQL: Health-related quality of life; Clinical Hospital Center Split, Split, Croatia. Warwick Medical School, ISRCTN: International Standard Randomised Controlled Trial Number; University of Warwick, Coventry, UK. Yulius Academy, Yulius Mental Health PI: Principal Investigator; PPI: Patient and Public Involvement; QALY: Quality Organization, Barendrecht, Netherlands. Department of Child and adjusted life year; RA: Research Assistant; SCEAB: Scientific Clinical and Ethical Adolescent Psychiatry, University College Dublin School of Medicine and Advisory Board; TB: Transition Boundary; TRAM: Transition Readiness and Medical Science, Dublin, Republic of Ireland. Geary Institute, University Appropriateness Measure; TROM: Transition Related Outcome Measure; College Dublin, Dublin, Republic of Ireland. Centre Hospitalier Universitaire YP: Young person de Montpellier, Montpellier, France. Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK. HealthTracker Ltd, Gillingham, UK. Acknowledgements Psychiatric Epidemiology and Evaluation Unit, Saint John of God Clinical We are very grateful for the CAMHS and AMHS services and research teams Research Center, Brescia, Italy. Department of Neurosciences, Child & who are collaborating in the MILESTONE study in the eight European Adolescent Psychiatry, University of Leuven, Leuven, Belgium. Department countries. We also extend thanks to all the participating service users and of Child & Adolescent Psychiatry, University Hospitals Leuven, Leuven, their parents/carers. We are also grateful for the members of the MILESTONE Belgium. Department of Psychology, University of Warwick, Coventry, UK. Scientific Clinical and Ethical Advisory Board (SCEAB): Norman Sartorius, Pat Department of Child Psychiatry, Our Lady’s Hospital for Sick Children, McGorry, Maryann Davis, and Adriana Mihai. We would also like to thank Dublin, Republic of Ireland. Lucena Clinic SJOG, Dublin, Republic of Ireland. members of the wider MILESTONE Consortium for their contribution. We Centre for Interventional Paediatric Psychopharmacology and Rare Diseases extend a special thanks to Andrea Wohner, our project manager based at (CIPPRD), National and Specialist Child and Adolescent Mental Health concentris research management gmbh, Fürstenfeldbruck, Germany, for Services, Maudsley Hospital, London, UK. excellent project management and delivery. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 9 of 11 Received: 21 December 2017 Accepted: 22 May 2018 22. 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Young people, mental health practitioners and researchers co- produce a transition preparation Programme to improve outcomes and experience for young people leaving child and adolescent mental health services (CAMHS). BMC Health Serv Res. 2017;17(1):293. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Psychiatry Springer Journals

Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology

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Abstract

Background: Transition from distinct Child and Adolescent Mental Health (CAMHS) to Adult Mental Health Services (AMHS) is beset with multitude of problems affecting continuity of care for young people with mental health needs. Transition-related discontinuity of care is a major health, socioeconomic and societal challenge globally. The overall aim of the Managing the Link and Strengthening Transition from Child to Adult Mental Health Care in Europe (MILESTONE) project (2014–19) is to improve transition from CAMHS to AMHS in diverse healthcare settings across Europe. MILESTONE focuses on current service provision in Europe, new transition-related measures, long term outcomes of young people leaving CAMHS, improving transitional care through ‘managed transition’, ethics of transitioning and the training of health care professionals. Methods: Data will be collected via systematic literature reviews, pan-European surveys, and focus groups with service providers, users and carers, and members of youth advocacy and mental health advocacy groups. A prospective cohort study will be conducted with a nested cluster randomised controlled trial in eight European Union (EU) countries (Belgium, Croatia, France, Germany, Ireland, Italy, Netherlands, UK) involving over 1000 CAMHS users, their carers, and clinicians. Discussion: Improving transitional care can facilitate not only recovery but also mental health promotion and mental illness prevention for young people. MILESTONE will provide evidence of the organisational structures and processes influencing transition at the service interface across differing healthcare models in Europe and longitudinal outcomes for young people leaving CAMHS, solutions for improving transitional care in a cost-effective manner, training modules for clinicians, and commissioning and policy guidelines for service providers and policy makers. Trial registration: “MILESTONE study” registration: ISRCTN ISRCTN83240263 Registered 23 July 2015; ClinicalTrials.gov NCT03013595 Registered 6 January 2017. Keywords: Mental health, Child and adolescent mental health services, Transition, Health services research, Cluster randomised controlled trial, Longitudinal cohort study, Youth mental health, Policy, Professional training, Europe * Correspondence: helena.tuomainen@warwick.ac.uk H. Tuomainen and U. Schulze contributed equally to this work. Mental Health and Wellbeing, Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 2 of 11 Background disorders and those with emerging mood, psychotic, The journey into adult life is a time of profound physio- personality-related or substance abuse disorders slip logical, psychological and social change for young people through the care net at the transition boundary [29, [1, 2]. Young people are expected to take responsibility 45–48]. With insufficient support in place, many disen- for themselves, make their own decisions and become fi- gage from mental health services altogether only to nancially independent [3]. Late adolescence is also a high present to adult services subsequently, with more severe risk period for the emergence of mental disorders, alco- and enduring mental health problems [24, 49, 50]. Such hol and substance abuse and risk taking behaviour [1, 4, occurrences may have been prevented or better con- 5]. Overall rates of mental health problems in young trolled had better transition arrangements been in place. people increase with age, problems become more com- Young people who undergo a planned and purposeful plex, and emerging disorders, such as psychosis and per- transition process that addresses their psychosocial and sonality disorders, develop [6]. Moreover, mental medical needs, experience an improvement in their disorders in adolescence predict mental health problems mental health and functioning [29, 47]. Yet, due to a in adulthood [7–9]. 50% of mental health problems policy-practice gap [28], few of those who do transition emerge by the age of 16 years and 75% by the age of 24 from CAMHS to AMHS experience ‘optimal transition’, [10, 11]. Intervening early when mental disorders which has been characterised by a period of parallel care emerge, such as in psychosis, can reduce their severity between CAMHS and AMHS, at least one transition and persistence and yield positive outcomes [12, 13]. planning meeting, adequate information transfer and Unsatisfactory care carries a risk of illness extension, continuity of care [27]. Studies carried out in the Repub- progression and chronicity, which has multiple adverse lic of Ireland [23, 51] and France [52] suggest that prob- effects, including on psychosocial functioning and lems of the same nature and magnitude at the self-determination [14, 15]. Yet only a small proportion CAMHS-AMHS interface are occurring in other of young people with mental health problems, less than European countries. This poses a major health, socioeco- one in six, access services or receive appropriate care nomic and societal challenge for the care and wellbeing [16–18]. All over Europe, those with persisting mental of young people with mental health needs within the health needs usually move from Child and Adolescent European Union (EU), which is exacerbated by the dif- Mental Health Services (CAMHS) to Adult Mental ferent mental health care service structures and Health Services (AMHS) around the critical age of 16– provision in the member states [53–55]. The develop- 18 years. However, ideological, structural, functional and ment of solutions is made harder by the lack of system- organisational differences between CAMHS and AMHS atic and robust evidence on the nature and severity of hamper this transition [19–29]. The disruption of care transition-related problems across the differing health to young people at the CAMHS-AMHS interface, and care contexts in Europe and on their impact upon the the long-term adverse effects on their health, wellbeing health and wellbeing of young people. and potential is of concern worldwide [1, 8, 30–32]. The transitions literature often uses words such as The importance of improving young people’s transi- ‘lost’ [56, 57], ‘divide’ [41] and ‘gap’ [51] to describe what tion from child-orientated to adult-orientated health ser- happens to young people or the care of young people at vices has been recognised since the early 1990s [33]. For the CAMHS-AMHS interface. Different models of tran- about a decade, such transition was discussed but rarely sitional mental health care for young people have been studied [34]. In the 2000s, transitions research in paedi- developed to maintain continuity of care, but recent sys- atric services increased [35], professional consensus tematic reviews show few adequately powered studies, statements were developed [36, 37] and national policy randomised controlled trials or case-controlled studies recognising the importance of transition started to evaluating their effectiveness [19, 58, 59]. The protocol emerge [38]. During this decade the importance of youth and reciprocal agreement model of transitional care, mental health [39] and improving transitions between prevalent in the United Kingdom, suffers from a policy– CAMHS and AMHS started to be highlighted [24, 40, practice disconnection [29] and organisational differ- 41]. Research on transition experiences of young people ences between CAMHS and AMHS [22, 60]; transition with mental health problems started to be published, programme models, more prevalent in the United States, from sources in the USA in the early 2000 (e.g. [42, 43]) tend to be difficult to roll out state-wide and have not and later in the decade from the United Kingdom (UK) been attempted nation-wide [61–63]. No studies have [44]. The transitions of care from child and adolescent evaluated the shared management framework model mental health services to adult mental health services [57]. It is also not clear how much of the published re- (TRACK) study [28, 29] and other research show that search was informed by patient and public involvement many young people with established mental health prob- at the design stage, rather than research studying the lems, such as neurodevelopmental and conduct views of service users and their parents/carers. The Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 3 of 11 quality of research into the ethical aspects of mental Transition Related Outcome Measure (TROM), to health transitions is poor in general [58] and the ethics aid clinicians’ decision-making and stimulate shared of assuming transition to adult services is the ideal has decision-making together with young people and been questioned by reviewers of papers and researchers their parents (WP2); because of possible risks associated with pathologising iii) tracking the journey and outcomes of young people transient and self-limiting distress and dysfunction, as they move out of CAMHS in a prospective which may be normal during adolescence. cohort study in the eight MILESTONE countries* The five year (2014–19) European Union-funded (WP3); Managing the Link and Strengthening Transition from iv) assessing the effectiveness of a ‘managed transition’ Child to Adult Mental Health Care (MILESTONE) pro- model based on the TRAM in a nested cluster ject (grant number 602442) will create a rich evidence randomised controlled trial (cRCT) within the base on transitional mental health care in Europe. Work prospective cohort* (WP4); is subdivided into several high-quality work packages fo- v) determining the cost-effectiveness of the model of cusing on different key aspects of research, bringing to- ‘managed transition’* (WP5); gether a European consortium of researchers. vi) exploring ethical aspects of transitional care via qualitative and quantitative methods (WP6); Objectives of MILESTONE vii) understanding and further developing professional The overall aim of MILESTONE is to study transition and clinical training models in CAMHS and AMHS from CAMHS to AMHS within the EU and to addressing service transition via a systematic review strengthen transitional care across different healthcare and surveys (WP8). systems. The key strategic objectives are to: *Together, these work packages constitute the 1. Delineate the CAMHS-AMHS interface across all “MILESTONE study”. EU nation states in terms of transition of care, The main deliverables for the EU for each work pack- service organisation, legal and policy imperatives, age are listed in Additional file 2. professional training and user/carer experience. Overview and geographical reach of the research projects 2. Understand the processes, outcomes and carried out within MILESTONE are illustrated in Fig. 1. experiences of transition from CAMHS to AMHS in healthcare settings across eight countries Methods/design (Belgium, Croata, France, Germany, Ireland, Italy, WP 1: Mapping the CAMHS-AMHS interface across the Netherlands, and the UK) in the EU, using a European mental health services bespoke suite of measures and to develop an ethical The aim of this work package is to analyse the clinical, framework for providing appropriate care to organisational and legal aspects of CAMHS-AMHS adolescents as they move to adulthood. interface at national and regional levels across all 28 3. Robustly test a model of ‘managed transition’ for its EU states. The mapping exercise will help identify tran- clinical and cost-effectiveness in improving health sition policies and models in different EU healthcare and social outcomes and transition to adult health and social settings, and clarify how and by whom deci- services, as compared to treatment as usual. sions about transition are made within each national 4. Disseminate this evidence by developing training mental health system. A futher aim is to examine tran- modules for clinicians, and commissioning and sition in other health areas and social services in the policy guidelines for service providers and policy different European countries. makers; and extending knowledge about transition A list of European governmental and non-governmental to mental health professionals, to service users and associations able to provide data on CAMHS/AMHS their families, and to society in general. interface and transition was collated. Two measures were developed in English for completion online via a MILESTONE research dedicated web domain by country experts – child MILESTONE comprises seven freestanding research psychiatrists and representatives of national child- projects, which are organised into work packages (WP) psychiatry associations – within each of the 28 EU (see Additional file 1): member states: 1) the European CAMHS Mapping Questionnaire (ECM-Q), which was based on the i) mapping the CAMHS-AMHS interface and European Service Mapping Schedule [64]and inte- transition in all EU states via surveys (WP1); grated many of the domains used WHO CAMHS Atlas ii) developing two measures, the Transition Readiness [65]; and 2) the Standardized Assessment Tool for and Appropriateness Measure (TRAM) and the Mental Health Transition (SATMEHT), which was Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 4 of 11 Fig. 1 Research projects within MILESTONE. Green hexagons: research involving the eight MILESTONE countries only. Grey hexagons: research involving all European countries developed from an instrument used in the TRACK disregard of conflicting information, and misperceptions study [29] and other questionnaires [34, 43, 66, 67]. of other/adult services [70, 71]. So far a planned, pur- For the ECM-Q, the primary aim was to characterise poseful and needs-based assessment of those who reach child and adolescent mental health care provision across the transition boundary does not exist. Furthermore, countries (e.g. number of CAMHS per 100,000 young there are no validated and reliable measures that specif- people), including collaboration with other services, ac- ically assess the experience, outcomes, and effectiveness tivity data and funding sources. For the SATMEHT, the of mental health transitional care. primary aim was to characterise the transition process The aim of this work package was therefore to create a and services configuration per country (e.g. proportion low-burden, reliable and efficient suite of measures re- of young people attending CAMHS needing a transition lated to transitioning from CAMHS to AMHS, one for to AMHS), including the availability of policies regulat- assessing the young person’s readiness and appropriate- ing the CAMHS-AMHS interface and the degree of ness for transition, and the other for measuring out- stakeholders’ involvement. More detailed methodology comes linked with transition. The Transition Readiness and findings from the ECM-Q and SATMEHT have and Appropriateness Measure (TRAM) is a clinician been reported elsewhere [68, 69]. support and assessment tool designed to identify high-risk, high-need young people for whom transition WP 2: Development and monitoring using the MILESTONE to AMHS is critical. The Transition Related Outcome suite of measures Measure (TROM) assesses the quality and outcome of Ideally all young people who reach the CAMHS-AMHS transition, and includes most domains present in the transition boundary should be assessed in a structured TRAM, allowing for comparison of results over time. and standardised way to determine ongoing need for Most questions in the TRAM and TROM are asked of care [32]. Feeding back structured assessment results to all respondent types (young person, parent/carer and clinicians can lead to improved clinical decision making clinician); some are relevant only to the clinician and [70]. Clinical judgements made under time and resource others only to the young person and parent/carer. The constraints are affected by diagnostic and cognitive TRAM forms the basis of ‘managed transition’, as de- biases, assumptions based on patient background, a scribed below. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 5 of 11 TRAM and TROM were developed using qualitative identifying those with on-going care need, a transition and quantitative methods following the US FDA model including such an approach is not available, Guidance for Patient-reported Outcome Measures [72]. although its need has been articulated [74, 75]. Literature was critically reviewed for item/concept iden- We developed the ‘MILESTONE study’ to capture tification, and three waves of focus groups on item/con- this missing information [76]. In this ongoing study we cept elicitation were carried out involving young people recruit and prospectively follow a large cohort of over with experience of CAMHS, their parents/carers and 1000 young people approaching the CAMHS-AMHS mental health professionals at two mental health NHS transition boundary in the participating EU countries. trusts in the UK. Based on the analysis of the data thus The cohort study aims to evaluate the young people’s obtained, items were formed into scales and subjected to mental health, quality of life and functioning while still user testing so that problems with the format and com- at CAMHS, and identify predictors of transitional tra- pletion issues could be identified. The final versions jectories, experiences and mental health outcomes over were translated into French, Italian, German, Dutch and a follow-up period of two years. Nested within this co- Croatian. Participant-optimised web-based versions were hort study is a cluster randomised controlled trial developed using HealthTracker™ (https://www.health- (cRCT) testing whether the implementation of the tracker.co.uk/), a web-based portal which allows mea- model of managed transition in CAMHS at the transi- sures to be completed remotely and which has been tion boundary improves the mental health and social used in other EU FP7 projects [73]. The construct valid- outcomes of young people and their transition to adult ity, content validity, inter-rater reliability, test-retest reli- roles when they move on from CAMHS, as compared ability, and sensitivity to change of TRAM and TROM with usual care. ‘Managed transition’ includes feedback were assessed in a sub-study conducted in the eight to clinicians from the TRAM assessment. In the inter- MILESTONE countries, involving young people with ex- vention arm clusters, clinicians are provided with perience of CAMHS, parents/carers/spouses, and mental TRAM Score summary reports for the young people health professionals. The development, psychometric participating in the study. Clinicians are advised to dis- testing and implementation of TRAM and TROM will cuss the report with the young person and parent/carer, be presented in separate publications. include relevant points in a transitional care plan, and The “TRAM score summary report” brings together to attach it to the referral letter, if further care is indi- the TRAM scores from the young person, parent/carer cated. Young people in the control clusters receive and CAMHS clinician with graphs visualising differences treatment as usual, which depends on service and may or similarities in responses. The report, which is de- or may not include transition planning. signed as a decision support tool, contains items that are The cohort study and cRCT share recruitment and relevant to clinicians’ transition decisions (symptoms, data collection. Detailed information about eligibility risk factors and disruption experienced by the young criteria and methodology have been described else- person) and those that can facilitate a smooth transition. where [76]. The primary outcome for the trial is mental It is intended as a quick and efficient method of display- health and social functioning status as measured by the ing all information relevant to transition decisions in a Health of the Nation Outcome Scale for Child and user-friendly, relevant and accessible format, allowing Adolescents (HoNOSCA) at 15 months after baseline key facts to be easily transferred to care plans and refer- [77–79]. The measure is completed by a trained MILE- rals. The report forms the basis of ‘managed transition’ STONE research assistant by interviewing the young and its ease of use will be verified by questioning clini- person and taking into account all other available cians partaking in the MILESTONE study (see below). sources of information (parent/carer, relevant clinician and the medical records) to ensure accuracy of data [80]. The secondary outcomes are detailed in the study WP 3 & 4: The MILESTONE study: A longitudinal cohort protocol, and include transition outcomes (TROM), study of transition of care from CAMHS to AMHS and a self-reported and parent/carer reported psychopathology, nested cluster randomised control trial (cRCT) of managed emotional and behaviour problems of the service user transition in improving outcomes for young people (reported by both parent/carer and the young person him/ We do not know the longitudinal outcomes and experi- herself), illness severity, quality of life, independent ences of young people who reach the transition bound- behaviour, illness perception, barriers to care, transi- ary for CAMHS in different EU countries, with varying tion experience and readiness, and adult functioning service structures, transition ages, service provision and [76]. Data collection is the same in the intervention care. Furthermore, despite the intuitive simplicity and and control clusters. Outcomes are measured clinical importance of a care pathway which incorporates 9 months (T2), 15 months (T3) and 24 months (T4) an evidence-based decision-making process for after baseline (T1). Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 6 of 11 WP 5: Economic evaluation of the ‘managed transition’ experiences. The first two parts contribute to the develop- intervention ment of an Ethics of Transitioning questionnaire. This work package evaluates the cost-effectiveness of the The systematic review focuses on ethical aspects of tran- model of ‘managed transition’. The aim is to assess sitional care between child-orientated and adult-orientated whether the intervention conveys any benefits regarding health services in general; a more detailed methodology participant health-related quality of life and HoNOSCA and findings have been reported elsewhere [87]. scores, as well as health care usage, social care usage/so- The focus groups with members of youth advocacy cial costs and intervention costs as compared to treat- and mental health advocacy groups were carried out in ment as usual. Data collection is embedded in the the Republic of Ireland, the UK and Croatia by address- MILESTONE study [76]. ing ethical issues raised in vignettes. Each vignette de- Quality adjusted life years (QALYs) and HoNOSCA scribed a young person with a particular diagnosis and score are the two primary outcomes for the economic mental health history approaching the end of their care evaluation [77, 78]. The EQ-5D-5L [81] will be used to at CAMHS, with a decision needed to be made regard- measure Health-related quality of life (HRQL). Young ing their onward mental health treatment. The Ethics of people in the MILESTONE study compete the measure Transitioning questionnaire developed based on the at all four time points. Index scores [82] will be applied findings of the focus groups and systematic review was to calculate QALYs to ascertain the impact of the inter- included in the assessment battery of the MILESTONE vention on HRQL. The cost-effectiveness of the inter- study to retrieve young people’s views about ethical as- vention on mental health will be estimated by examining pects of transitioning from all eight countries. changes in QALYs and HONOSCA score between the The focus groups with young people and parents/ two trial arms in conjunction with the costs. The influ- carers who have participated in the MILESTONE study ence of alternative service delivery models and national will be conducted during the last assessment time point settings on cost-effectiveness will be explored. of the MILESTONE study in at least the three above Health and social care resource utilisation is the sec- countries. The aim will be to explore the actual experi- ondary outcome. The MILESTONE specific Client Ser- ences of the young people regarding services at the tran- vice Receipt Inventory (CSRI) completed at the four sition boundary, but also their views regarding the time points has been designed to help estimate the util- ethical aspects of service provision. Separate focus isation of resources. It draws on a CSRI used previously groups with a maximum of five participants will be held to estimate mental health care costs in the UK [83], but for young people and parent/carers, with a total of ap- was substantially revised for use in MILESTONE. Fur- proximately 20 young people and 10 parent/carers tak- thermore, CAMHS/AMHS in intervention sites are ing part per country. asked for specific details of the impact of the ‘managed Data from the separate arms of the ethics work pack- transition’ intervention in terms of the number of staff age will be integrated during the analysis phase, and involved in transition, their workload, and additional ser- linked up with findings from the MILESTONE study. vice resources required. WP 8: Training of professionals for improving transitional care across the EU WP 6: Ethics of transitioning Many of the profound clinical, conceptual and ideo- An enquiring ethical stance is needed in the face of an logical differences between child and adult mental health automatic assumption that transfer of care from child to service models that contribute to transitional problems adult services is necessarily ‘good’ or appropriate in all are related to psychiatry and other associated profes- cases [84–86]. Yet there is very little research on ethical sional training. For example, the CAMHS-AMHS separ- aspects of transitional care. ation and consistent differences in care philosophies has The aim of this work package is therefore to a) scrutin- allowed clinical focus to shift away from developmental ise the assumption that transition from CAMHS to psychiatry [19]. AMHS is always the best option, and b) explore the eth- The aims of this work pachage are to describe current ical/legal challenges of ensuring delivery of transitional training models used across EU for CAMHS and AMHS care to those who need it most against the risk of patholo- and to assess their contribution and impact on the or- gising transient and self-limiting distress and dysfunction, ganisation and efficacy of transitional care at the service which may be normal during adolescence. The work pack- provider level. This will be achieved by conducting a) a age has three main parts to it: a systematic review, a focus systematic review on adult and child/adolescent psych- groups with members of youth advocacy and mental iatry training and b) surveys on psychiatry and psych- health advocacy groups, and focus groups with partici- ology training. We will also develop training models and pants of the MILESTONE study with different transition guidelines for universities and policy makers according Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 7 of 11 to the results of the studies in MILESTONE in order to representatives were identified, engaged, and appropri- optimize transition between child and adult mental ately trained and supported to participate in the project health services. as consultants and steering group members. They have The systematic review focuses on two key themes: 1) provided advice on the development and refinement of the structure and content of current training across the research methodology of the MILESTONE study, Europe in general and adult psychiatry (GAP) and child tested the suite of study documents, and recommended and adolescent psychiatry (CAP) as defined by the strategies for recruitment and retention of participants. European Union of Medical Specialists (UEMS) [88]; and They also assist the various other research projects run- 2) if and how transition is addressed in any of the GAP and ning under MILESTONE, attend the SC and annual CAP training. The review covers all European countries. general meetings, and help plan and develop public en- Bespoke questionnaires have been developed for the gagement activities. In the last two years, young service surveys: The psychiatry questionnaire covers adult users from another MILESTONE country, and carer psychiatry and child and adolescent psychiartry training representatives, will be involved. The ongoing work of in Europe, with questions for both specialties on theoret- the PPI representatives was recognised in the UK by a ical and practical training, and transition as a subject. service user and carer involvement in mental health re- The questionnaire is aimed at representatives in charge search award in 2016. of specialized training in psychiatry in all EU-countries. A similar questionnaire on psychology training aimed at Dissemination representatives of national psychological associations in Effective and creative dissemination of the MILESTONE the eight MILESTONE countries has also been devel- project will be ensured throughout all its stages, from in- oped and circulated. A third survey focuses on trainees’ ception and recruitment to study results and recommen- perspectives and is conducted in collaboration with the dations to all stakeholders, including service providers, European Federation of Psychiatric Trainees. commissioners, policy makers, user and carer groups and In the analysis phase, findings will be compared and any other target groups working at the interface between integrated with the other studies running under the adolescence and adult mental health care. To date, this in- MILESTONE project, for the development of a) a training cludes a TEDx talk and a film on the theme of transition programme for transitional care and b) guidelines for har- developed through participatory workshops involving monizing CAMHS and AMHS training across the EU. MILESTONE PPI representatives and researchers. Governance, oversight committees and patient and public Discussion involvement (PPI) The MILESTONE project is to the best of our know- The MILESTONE consortium is a partnership between ledge the first of its kind in the scope and scale of re- academics and clinicians from child and adult psychiatry search focused specifically on transitions at the and psychology, researchers, voluntary services and advo- CAMHS-AMHS interface across Europe. It will provide cacy groups in eight countries. Management is through a a comprehensive yet nuanced account of the organisa- monthly steering committee (SC, i.e. trial management tion, policy, and practice of care for young people with group), comprising principal investigators from each mental health needs at the CAMHS-AMHS boundary MILESTONE country and core research staff. Practical- across the EU, and a timely analysis of their outcomes ities of the MILESTONE study are discussed at regular re- and experiences. This will help identify opportunities to search assistant (RA) teleconferences. The SC meets improve their health care outcomes, social functioning, face-to-face every six months, and the whole research and quality of life, enabling them to more easily progress team annually (General Assembly). Project management to meaningful adult roles. is provided by concentris, a small and medium-sized en- Although there are some existing service level innovations terprise specialised in the management of EU-funded pro- in Australia (ORYGEN, Melbourne https://oyh.org.au/), jects. The conduct and progress of MILESTONE as a Ireland (JIGSAW, https://www.jigsaw.ie/) and UK (Forward whole is overseen by the independent MILESTONE Thinking Birmingham, https://www.forwardthinkingbirmin Scientific, Clinical and Ethical Advisory Board (SCEAB). It gham.org.uk/) that are attempting, in their different meets annually at the General Assembly and comprises healthcare contexts, to redefine service structures for four international experts and four Patient and Public young people with mental health needs (up to 25 years), Involvement (PPI) representatives who offer advice there is still much to be done. The practice of having a and monitor the progress of the project towards its CAMHS-AMHS divide is deeply rooted in European stated aims. mental health provision and tradition. First politically MILESTONE has strong PPI embedded throughout relevant steps are being taken in some countries. In the project. Initially, five British service user Germany, for example, national specialist societies are Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 8 of 11 identifying the need for interdisciplinary cooperation Funding The MILESTONE project has received funding from the European Union’s and a “Transitional Psychiatry Task Force” has been Seventh Framework Programme for research, technological development created. It is expected that the findings of MILESTONE and demonstration under grant agreement no 602442. This paper reflects will encourage services across Europe to question their only the authors’ views and the European Union is not liable for any use that may be made of the information contained therein. The funding body has structure and identify current weaknesses in the had no role in the study design, in the writing of the protocol or in the CAMHS-AMHS care pathway so that outcomes for decision to submit the paper for publication. young people and their families can be improved by adapting best evidence-based practice into their service Authors’ contributions provision. Proposed changes to services should ensure SPS is the chief investigator who conceived the project and obtained funding, that those young people who need it receive on-going together with PS, AM, FV, GD, DW, MP, CS, JM, FM, TF, DPO, ST and US. HT is the scientific research manager and MILESTONE study coordinator who care and that others with transient or remitted condi- prepared the first draft and subsequent versions of this manuscript, and is joint tions are not ‘pathologised’ and do not receive inappro- first author with US. JW, MP, GS and SPS contributed to the manuscript. priate, unnecessary or potential harmful interventions. All authors critically reviewed the protocol and the manuscript, and gave approval for the publication. Although structural weaknesses at the CAMHS-AMHS interface have been recognised for almost 25 years [33], theevidence baseisstillweak andthe need for high Ethics approval and consent to participate quality research and common efforts at different levels The MILESTONE study protocol (covering studies in WP 3, 4, 5 and 6 focus groups) received favourable ethical opintion from West Midlands - South (across countries, involving various research organisa- Birmingham Research Ethics Committee (ref. 15/WM/0052). The Protocol for tions, professional bodies and specialist societies) re- development and e-monitoring using the MILESTONE Suite of Measures mains high. Action is needed to bring together the (covering study 2) was approved by the the NRES Committee London - Camberwell St Giles (ref. 14/LO/1049). In both instances, approvals were seemingly disparate worlds of child/adolescent and gained from equivalent ethics boards in participating countries. For WP 6 first adult mental health services and learn from other coun- round of focus groups, Saint John of God Hospitaller Services in the Republic tries about how to minimise policy-practice gaps, and of Ireland granted a favourable opinion (ref. 604/583) and these were also obtained from equivalent bodies in the UK and Croatia. improve transition procedures and outcomes. Any re- search should be informed by and involve young people who have experienced transition from CAMHS [89]. Competing interests Frank C. Verhulst is a contributing author of the Achenbach System of Empirically Based Assessments, for which he receives remuneration. Paramala Santosh is the Additional files director of HealthTacker Ltd. Additional file 1: MILESTONE work packages (WP), WP leaders and partner institutions. The table contains information about work package titles, names of the work package leaders, their institutions, and countries. Publisher’sNote (DOCX 13 kb). Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Additional file 2: MILESTONE work package deliverables for the EU. The table contains information about the deliverables linked with each Author details workpackage that have to be submitted to the EU. (DOCX 20 kb). Mental Health and Wellbeing, Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK. Department of Child and Abbreviations Adolescent Psychiatry/Psychotherapy, University of Ulm, Ulm, Germany. AMHS: Adult Mental Health Services; CAMHS: Child and Adolescent Mental Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Health Services; CI: Chief Investigator; cRCT: Cluster Randomised Controlled Coventry, UK. Coventry and Warwickshire Partnership NHS Trust, Coventry, Trial; CSRI: Client Service Receipt Inventory; EQ-5D-5L: Euroquol (quality of life UK. Department of Child and Adolescent Psychiatry and Psychology, measure); EU: European Union; HoNOSCA: Health of the Nation Outcome Erasmus Medical Center, Rotterdam, Netherlands. Department of Psychiatry, Scale for Children and Adolescents; HRQL: Health-related quality of life; Clinical Hospital Center Split, Split, Croatia. Warwick Medical School, ISRCTN: International Standard Randomised Controlled Trial Number; University of Warwick, Coventry, UK. Yulius Academy, Yulius Mental Health PI: Principal Investigator; PPI: Patient and Public Involvement; QALY: Quality Organization, Barendrecht, Netherlands. Department of Child and adjusted life year; RA: Research Assistant; SCEAB: Scientific Clinical and Ethical Adolescent Psychiatry, University College Dublin School of Medicine and Advisory Board; TB: Transition Boundary; TRAM: Transition Readiness and Medical Science, Dublin, Republic of Ireland. Geary Institute, University Appropriateness Measure; TROM: Transition Related Outcome Measure; College Dublin, Dublin, Republic of Ireland. Centre Hospitalier Universitaire YP: Young person de Montpellier, Montpellier, France. Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK. HealthTracker Ltd, Gillingham, UK. Acknowledgements Psychiatric Epidemiology and Evaluation Unit, Saint John of God Clinical We are very grateful for the CAMHS and AMHS services and research teams Research Center, Brescia, Italy. Department of Neurosciences, Child & who are collaborating in the MILESTONE study in the eight European Adolescent Psychiatry, University of Leuven, Leuven, Belgium. Department countries. We also extend thanks to all the participating service users and of Child & Adolescent Psychiatry, University Hospitals Leuven, Leuven, their parents/carers. We are also grateful for the members of the MILESTONE Belgium. Department of Psychology, University of Warwick, Coventry, UK. Scientific Clinical and Ethical Advisory Board (SCEAB): Norman Sartorius, Pat Department of Child Psychiatry, Our Lady’s Hospital for Sick Children, McGorry, Maryann Davis, and Adriana Mihai. We would also like to thank Dublin, Republic of Ireland. Lucena Clinic SJOG, Dublin, Republic of Ireland. members of the wider MILESTONE Consortium for their contribution. We Centre for Interventional Paediatric Psychopharmacology and Rare Diseases extend a special thanks to Andrea Wohner, our project manager based at (CIPPRD), National and Specialist Child and Adolescent Mental Health concentris research management gmbh, Fürstenfeldbruck, Germany, for Services, Maudsley Hospital, London, UK. excellent project management and delivery. Tuomainen et al. BMC Psychiatry (2018) 18:167 Page 9 of 11 Received: 21 December 2017 Accepted: 22 May 2018 22. 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BMC PsychiatrySpringer Journals

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