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

The journey into adult life is a time of profound physiological, psychological and social change for young people [1, 2]. Young people are expected to take responsibility for themselves, make their own decisions and become financially independent [3]. Late adolescence is also a high risk period for the emergence of mental disorders, alcohol and substance abuse and risk taking behaviour [1, 4, 5]. Overall rates of mental health problems in young people increase with age, problems become more complex, and emerging disorders, such as psychosis and personality disorders, develop [6]. Moreover, mental disorders in adolescence predict mental health problems in adulthood [7‐9]. 50% of mental health problems emerge by the age of 16 years and 75% by the age of 24 [10, 11]. Intervening early when mental disorders emerge, such as in psychosis, can reduce their severity and persistence and yield positive outcomes [12, 13]. Unsatisfactory care carries a risk of illness extension, progression and chronicity, which has multiple adverse effects, including on psychosocial functioning and self-determination [14, 15]. Yet only a small proportion of young people with mental health problems, less than one in six, access services or receive appropriate care [16‐18]. All over Europe, those with persisting mental health needs usually move from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) around the critical age of 16–18 years. However, ideological, structural, functional and organisational differences between CAMHS and AMHS hamper this transition [19‐29]. The disruption of care to young people at the CAMHS-AMHS interface, and the long-term adverse effects on their health, wellbeing and potential is of concern worldwide [1, 8, 30‐32].

The importance of improving young people’s transition from child-orientated to adult-orientated health services has been recognised since the early 1990s [33]. For about a decade, such transition was discussed but rarely studied [34]. In the 2000s, transitions research in paediatric services increased [35], professional consensus statements were developed [36, 37] and national policy recognising the importance of transition started to emerge [38]. During this decade the importance of youth mental health [39] and improving transitions between CAMHS and AMHS started to be highlighted [24, 40, 41]. Research on transition experiences of young people with mental health problems started to be published, from sources in the USA in the early 2000 (e.g. [42, 43]) and later in the decade from the United Kingdom (UK) [44]. The transitions of care from child and adolescent mental health services to adult mental health services (TRACK) study [28, 29] and other research show that many young people with established mental health problems, such as neurodevelopmental and conduct disorders and those with emerging mood, psychotic, personality-related or substance abuse disorders slip through the care net at the transition boundary [29, 45‐48]. With insufficient support in place, many disengage from mental health services altogether only to present to adult services subsequently, with more severe and enduring mental health problems [24, 49, 50]. Such occurrences may have been prevented or better controlled had better transition arrangements been in place. Young people who undergo a planned and purposeful transition process that addresses their psychosocial and medical needs, experience an improvement in their mental health and functioning [29, 47]. Yet, due to a policy-practice gap [28], few of those who do transition from CAMHS to AMHS experience ‘optimal transition’, which has been characterised by a period of parallel care between CAMHS and AMHS, at least one transition planning meeting, adequate information transfer and continuity of care [27]. Studies carried out in the Republic of Ireland [23, 51] and France [52] suggest that problems of the same nature and magnitude at the CAMHS-AMHS interface are occurring in other European countries. This poses a major health, socioeconomic and societal challenge for the care and wellbeing of young people with mental health needs within the European Union (EU), which is exacerbated by the different mental health care service structures and provision in the member states [53‐55]. The development of solutions is made harder by the lack of systematic and robust evidence on the nature and severity of transition-related problems across the differing health care contexts in Europe and on their impact upon the health and wellbeing of young people.

The transitions literature often uses words such as ‘lost’ [56, 57], ‘divide’ [41] and ‘gap’ [51] to describe what happens to young people or the care of young people at the CAMHS-AMHS interface. Different models of transitional mental health care for young people have been developed to maintain continuity of care, but recent systematic reviews show few adequately powered studies, randomised controlled trials or case-controlled studies evaluating their effectiveness [19, 58, 59]. The protocol and reciprocal agreement model of transitional care, prevalent in the United Kingdom, suffers from a policy–practice disconnection [29] and organisational differences between CAMHS and AMHS [22, 60]; transition programme models, more prevalent in the United States, tend to be difficult to roll out state-wide and have not been attempted nation-wide [61‐63]. No studies have evaluated the shared management framework model [57]. It is also not clear how much of the published research was informed by patient and public involvement at the design stage, rather than research studying the views of service users and their parents/carers. The quality of research into the ethical aspects of mental health transitions is poor in general [58] and the ethics of assuming transition to adult services is the ideal has been questioned by reviewers of papers and researchers because of possible risks associated with pathologising transient and self-limiting distress and dysfunction, which may be normal during adolescence.

The five year (2014–19) European Union-funded Managing the Link and Strengthening Transition from Child to Adult Mental Health Care (MILESTONE) project (grant number 602442) will create a rich evidence base on transitional mental health care in Europe. Work is subdivided into several high-quality work packages focusing on different key aspects of research, bringing together a European consortium of researchers.

The MILESTONE project is to the best of our knowledge the first of its kind in the scope and scale of research focused specifically on transitions at the CAMHS-AMHS interface across Europe. It will provide a comprehensive yet nuanced account of the organisation, policy, and practice of care for young people with mental health needs at the CAMHS-AMHS boundary across the EU, and a timely analysis of their outcomes and experiences. This will help identify opportunities to improve their health care outcomes, social functioning, and quality of life, enabling them to more easily progress to meaningful adult roles.

Although there are some existing service level innovations in Australia (ORYGEN, Melbourne https://​oyh.​org.​au/), Ireland (JIGSAW, https://​www.​jigsaw.​ie/) and UK (Forward Thinking Birmingham, https://​www.​forwardthinkingb​irmingham.​org.​uk/) that are attempting, in their different healthcare contexts, to redefine service structures for young people with mental health needs (up to 25 years), there is still much to be done. The practice of having a CAMHS-AMHS divide is deeply rooted in European mental health provision and tradition. First politically relevant steps are being taken in some countries. In Germany, for example, national specialist societies are identifying the need for interdisciplinary cooperation and a “Transitional Psychiatry Task Force” has been created. It is expected that the findings of MILESTONE will encourage services across Europe to question their structure and identify current weaknesses in the CAMHS-AMHS care pathway so that outcomes for young people and their families can be improved by adapting best evidence-based practice into their service provision. Proposed changes to services should ensure that those young people who need it receive on-going care and that others with transient or remitted conditions are not ‘pathologised’ and do not receive inappropriate, unnecessary or potential harmful interventions.

Although structural weaknesses at the CAMHS-AMHS interface have been recognised for almost 25 years [33], the evidence base is still weak and the need for high quality research and common efforts at different levels (across countries, involving various research organisations, professional bodies and specialist societies) remains high. Action is needed to bring together the seemingly disparate worlds of child/adolescent and adult mental health services and learn from other countries about how to minimise policy-practice gaps, and improve transition procedures and outcomes. Any research should be informed by and involve young people who have experienced transition from CAMHS [89].