Transition from child to adult mental health services: needs, barriers, experiences and new models of care

Transition from child to adult health care is a common experience for young people with enduring health problems who reach the age boundary between services. Transition is distinct from transfer 1, since it is more than a discrete administrative event. Good transition should be a co-ordinated, purposeful, planned and patient-centred process that ensures continuity of care, optimizes health, minimizes adverse events, and ensures that the young person attains his/her maximum potential. It starts with preparing a service user to leave a child-centred health care setting and ends when that person is received in, and properly engaged with, the adult provider 2. In physical disorders, transition became a clinical and research priority as an increasing number of young people with previously life-threatening conditions survived into adulthood and needed ongoing care. Systematic and narrative reviews in cystic fibrosis 3, haemophilia 4, diabetes 5, congenital heart disease 6, cancer 7, cerebral palsy and spina bifida 8 and palliative care 9 have all identified transition as a risk period for disengagement and deterioration, but also a therapeutic opportunity for ensuring good outcomes into adult life. Three broad categories of interventions have been tried: those aimed at the patient (educational programmes, skills training); those aimed at the staff (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and changes in service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up) 10. Yet the clinical and cost evaluation of such transition programmes is inconsistent and there are no robust and validated transition-related outcome measures 11. Transition in mental health appears to be equally, if not more, problematic than in physical care settings. Seamless transition from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) is not the norm; instead young people with mental health problems frequently find themselves without professional support or a referral to an adult service 1, 12. Alternatively, they may be referred, but the adult services are ill equipped to meet their needs 13. Studies from the U.K. and U.S. show that mental health service use declines drastically when young people reach 16 years of age (by 24% and 45%, respectively), and even more so at the age of 18 (over 60% in the U.K.) 14, 15. While young people with severe mental disorders such as psychosis are more likely to transition to adult services, those with neurodevelopmental, emotional/neurotic and personality disorders are far less likely to cross the boundary, and have more pronounced transition difficulties 15. In the U.K., only about 15% of young people with attention deficit hyperactivity disorder (ADHD) make a transition 16; the figure for Ireland is 7% 17. In the U.S., there is the additional problem of lack of, or inconsistent, health insurance coverage for ADHD 18. Adult ADHD services are sparse or non-existent and many professionals are sceptical about the existence of ADHD in adulthood 19. A particularly vulnerable group is represented by looked-after young people in the public care system, who are less likely to have family support but have significant mental health and social problems, including higher risk of self-harm and suicide, poorer educational achievement, and greater risk of unemployment, homelessness and incarceration 20. The labyrinthine service structures and interface means that the complex mental health needs of care-leavers remain unmet as they fall through the care gap 21 or disengage from services 22, increasing their use of crisis care 23 and ultimately leading to poor outcomes. Some key findings in recent years have changed our understanding of developmental psychopathology and age of onset of adult mental disorders. Large longitudinal epidemiological studies have confirmed continuity of childhood psychopathology into adult life, including both homotypic continuity (a disorder manifesting in the same manner across time) and sequential comorbidity 24. Our understanding of different developmental trajectories of the same disorder has improved; we know that juvenile onset disorders have poorer prognosis in adult life 25 and that sequential comorbidity may be due to a shared underlying diathesis 26. The National Comorbidity Survey Replication from the U.S. has radically altered our understanding of the age of onset of different mental disorders 27. This large dataset allowed the authors to explore the prevalence of mental health problems, and also determine the age of onset for each recognized (DSM-IV) disorder. Overall, half of all lifetime cases started by the age of 14, three quarters by the age of 24, with later onsets usually being comorbid conditions. The weight of evidence is such that adult mental health disorders are now being reframed as “extension of juvenile disorders” 28. Studies across the developed world show that young people do not engage well with adult services 29. Young people may not be aware of what is available or refrain from seeking help because of stigma and unhelpful beliefs about autonomy 30. Their fluctuating clinical presentation with multiple comorbidities may not meet stringent criteria for stretched and struggling services. They may face a bewildering array of developmental and situational transitions that accompany health care transitions, such as changes in housing and relationships, gaining greater independence and moving on to adult roles 15, 31. Parents and young people find services particularly unhelpful during the transition period 30, 32. Young people do not feel adequately prepared or supported during transition, lack understanding of adult services, feel insecure at the loss of the familiar and dread of the unfamiliar, and both young people and their families feel that their voices are not heard during the transition process 15, 31, 33. Abrupt and unplanned transition has been likened to “having to move house due to a flood” rather than a planned process determined by choice, appropriate advice and informed decision making 34. The current child-adult split in mental health services, therefore, creates weakness in the care pathway where it should be most robust 35 and is a major “design flaw” in current configuration 29. Historically, child and adult psychiatric services have developed under very different societal needs and demands 36. In the U.S., child psychiatry dates its beginning to 1899, with the establishment of the first Juvenile Court in Chicago, when a group of influential and socially concerned women started campaigning for better understanding and management of juvenile delinquency 37. The influence of child psychoanalysts such as A. Freud, H. Hug-Hellmuth and M. Klein ensured that child psychiatry had its ideological and conceptual roots firmly in family, community and society rather than in a biological or diagnostic paradigm. Over the subsequent decades, behavioural and educational psychologists, psychiatrists, criminologists, paediatricians, neurologists and social workers, often with starkly differing concepts about the causes and treatment of childhood mental disorders, contributed to the development of child psychiatry. Unlike adult psychiatry with its focus on individual psychopathology and diagnosis-led treatment, child psychiatry recognized early the wider influences of family and interpersonal processes in both the genesis and management of childhood mental disorders. Over time, child and adolescent services have developed a culture, an organization and models of functioning very different from adult care, and these pre-existing differences get accentuated at the transition boundary 15. A range of obstacles hampers communication and collaboration at the CAMHS and AMHS interface 38, 39. Separate funding and governance structures result in distinct systems with rigid boundaries and lack of understanding of services across the divide 40. Legal, logistic and clinical differences, combined with time and resources constraints, prevent services working together to provide parallel care, with particular concerns about where the responsibility of clinical care lies 31, 36. This lack of experience of working together contributes to limited understanding of what is needed, what is expected and the purpose of good transitional care 38. Some barriers relate to users and carers. Many young people and their families decline referral to adult services due to stigma and misperception. All these barriers contribute to a lack of referrals despite ongoing need for care, young people dropping through the care gap, and poor experience of care for those who make it to the other side 15, 31. Although barriers to good transition have been mapped, little has been tested to make transition better 41. Systematic reviews have identified a small number of interventions that facilitate transition, but the evidence is based on small, non-random, retrospective studies often with no comparison group 39. A recent international Delphi study identified six essential elements of a successful transition programme: a) assuring a good coordination (such as timing of transfer, communication, follow-up, remaining available as a consultant, etc.) between child and adult professionals; b) starting planning transition at an early age (at least one year before the transfer boundary); c) discussing with patient and family about self-management; d) including young person's views and preferences in transition planning; e) if developmentally appropriate, seeing the adolescent alone at least for part of the consultation; and f) identifying an adult provider willing to take on the young patient before transfer 42. In the looked-after population, transition support services that provide training and promote independence and self-sufficiency have been tried, but the evidence remains equivocal and the studies suffer from the same methodological limitations as identified in other reviews 43. Identifying what is needed appears much easier than actually providing it. In current clinical practice, there is no consensus on who can be discharged on reaching the transitional boundary, who should receive transitional care, how this care should be delivered, what outcomes should be measured, what are the outcomes of those who fall through the care gap, and what are the individual, organizational and societal costs of poor, inadequate or inappropriate transition. Recent evidence confirming that treatment in the early stages of a disorder is likely to be both a clinically and a cost-effective strategy to reduce long-term disease burden has led to very strong arguments that the early intervention paradigm should be applied to all disorders of youth onset 44. And instead of fixing “the broken bridge” between two models of care, neither of which serves young people well, there should be a radical redesign with a seamless new pathway within a stigma free, youth friendly specialist model. Several such models have sprung up in Australia, U.K., Ireland, Singapore and Denmark, with new ones proposed in Canada, U.S. and Israel 29. While some might argue that having a 0-25 service, as planned in Birmingham, U.K. (http://forwardthinkingbirmingham.org.uk) simply shifts the transition boundary to 25, the new pathway will be robust at the period of maximum risk both of discontinuity of care in early onset disorders and of the peak incidence of emerging mental disorders. Meanwhile, the search for good transition models continues. MILESTONE is a European Union (EU)-funded transition project (www.milestone-transitionstudy.eu) that aims to delineate the child-adult interface, including policies, service structure and organization, and transition-related training in mental health care across Europe; identify a large (N=1000) prospective cohort of transition age youth in eight EU countries and track their journey across the transition boundary; robustly test the clinical and cost-effectiveness of a model of managed transition in improving health and social outcomes using a cluster-randomized design; and create training, commissioning and policy guidelines for improving transitional care across the EU. Young people receiving care from child mental health services are at high risk of falling through the child-adult service gap as they cross the transition boundary between services; or experience poor care, leading to high risk of disengagement from services and discontinuity of care. The transition boundary spans the maximum risk period for the emergence of serious mental disorders, hence focussing on transitional care has the potential for transforming outcomes in youth mental health. We need to urgently develop and implement reformed service models that are specifically geared to meeting the unique needs of adolescents and young adults, are based on needs and preferences rather than strictly aligned to chronology and rigid diagnostic boundaries, and provide high quality evidence-based interventions that promote wellbeing, self-sufficiency, autonomy and fulfilment. Our young people deserve nothing less.

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