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Challenges during the transition from child and adolescent mental health services to adult mental health services

Published online by Cambridge University Press:  14 January 2020

Gaelle Hendrickx*
Affiliation:
Department of Neurosciences, Centre for Clinical Psychiatry, KU Leuven, Belgium
Veronique De Roeck
Affiliation:
Department of Neurosciences, Child and Adolescent Psychiatry, KU Leuven, Belgium
Athanasios Maras
Affiliation:
Yulius Academy, Yulius Mental Health Organization, The Netherlands
Gwen Dieleman
Affiliation:
Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center, The Netherlands
Suzanne Gerritsen
Affiliation:
Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center, The Netherlands
Diane Purper-Ouakil
Affiliation:
Child and Adolescent Psychiatry Unit, University Hospital of Montpellier, France
Frédérick Russet
Affiliation:
Child and Adolescent Psychiatry Unit, University Hospital of Montpellier, France
Renate Schepker
Affiliation:
Centre for Psychiatry South-Wuerttemberg, Germany
Giulia Signorini
Affiliation:
Psychiatric Epidemiology and Evaluation Unit, Saint John of God Clinical Research Center, Italy
Swaran Preet Singh
Affiliation:
Warwick Medical School, University of Warwick, UK
Cathy Street
Affiliation:
Warwick Medical School, University of Warwick, UK
Helena Tuomainen
Affiliation:
Warwick Medical School, University of Warwick, UK
Sabine Tremmery
Affiliation:
Department of Neurosciences, Child and Adolescent Psychiatry, KU Leuven, Belgium
*
Correspondence to Gaelle Hendrickx (gaelle.hendrickx@kuleuven.be)
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Abstract

The transition from child and adolescent to adult mental health services for young people with mental health problems is of international concern. Despite the high prevalence of mental disorders during adolescence and their tendency to continue during adulthood, the majority of young people do not experience continuity of care. The aim of this review paper is to unravel the complexity of transitional mental healthcare to clinicians, policy makers and mental health service managers, and to address challenges to a smooth transition process at all levels.

Type
Special Articles
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
Copyright © The Authors 2020

Young people's transition from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) has gained increasing international interest in recent years. At around the age of 16–18 years, young people with chronic mental health problems are confronted with two simultaneous transitions: a situational transition (from CAMHS to AMHS) and a developmental transition (to adulthood).Reference Singh, Paul, Ford, Kramer and Weaver1

Transition is defined as an efficient, planned, patient-oriented process that meets the medical, psychosocial and educational/occupational needs of young people with chronic conditions.Reference Blum, Garell, Hodgman, Jorissen, Okinow and Orr2 Additionally, the developmental perspective is important in conceptualising transition as young people, those aged 16–24 years, are confronted with changes in various life domains.Reference Arnett3,Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4

The transition age refers to the age at which the care of the young person in CAMHS is continued in AMHS, and in most cases, concerns young people in the 16–18 year age range. The following findings linked with psychopathology are relevant for transitional care at this time point: first, psychopathology has a high persistence from an early age into adulthoodReference Reef, Diamantopoulou, Meurs, Verhulst and Ende5; second, the onset of many psychopathologies has been shown to coincide with the transition age.Reference Kessler, Amminger, Aguilar-Gaxiola, Alonso, Lee and Üstün6,Reference de Girolamo, McGorry and Sartorius7 Critical changes in the brain occur during late adolescence, which make this age group more vulnerable for developing psychopathology.Reference de Girolamo, McGorry and Sartorius7

Moreover, 75% of all psychiatric disorders in adults start before 24 years of age, and 50% before 14 years of age.Reference Kessler, Chiu, Demler and Walters8 However, there is a discord in the pattern of increased risk of psychopathology in young people and mental health service use.Reference Singh, Paul, Ford, Kramer and Weaver1,Reference Vanclooster, Vanderhaegen, Bruffaerts, Hermans and Van Audenhove9 Older adolescents access care far less (28.9%) than 13- to 16-year-olds (50.9%) or adults over 26 years (41.1%).Reference Wang, Lane, Olfson, Pincus, Wells and Kessler10,Reference Copeland, Shanahan, Davis, Burns, Angold and Costello11 Furthermore, the gap between CAMHS and AMHS, the so-called ‘transition gap’, results in a clear discontinuity of care. A sizeable number of youth and young adults who ‘fall’ in this transition gap access adult services at a later point in time, when more serious and chronic problems have developed.Reference Singh12,Reference Signorini, Singh, Marsanic, Dieleman, Dodig-Curkovic and Franic13

The care gap affects not only the young people, but also their families, communities and society as a whole. Mental health problems are associated with poorer physical health and poorer functioning in the social, educational and economic life domains.Reference Singleton and Lewis14 At the societal level, the presence of a mental disorder during childhood leads to a 10-fold higher health cost during adulthood compared with children without mental health problems.Reference Suhrcke, Pillas and Selai15 To date, it is unclear what the real societal impact of the care gap in late adolescence is and to what extent adequate transitional care reduces this impact.

The aim of this paper is to summarise the new insights and developments investigated since the review of Singh in 2009.Reference Singh12 Furthermore, this paper includes research on youth mental health services and shared management components, which is one of the limitations of the review of Paul et al.Reference Paul, Street, Wheeler and Singh16

Continuation of care is a complex process, with important players at the policy and organisational level, service level and at the level of individuals: patients, their families and healthcare providers. However, care discontinuity cannot be explained by only one level.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4,Reference Coppens, Vermet, Knaeps, De Clerck, De Schrijver and Matot17 This paper attempts to unravel the complexity of transitional mental healthcare to clinicians, policy makers and mental health service managers, and to address challenges to a smooth transition process at all levels. The advantage of splitting the findings according to the three levels makes the extensive research regarding transition more manageable. Furthermore, it emphasises the complexity of the topic, but also makes clear that solutions are possible at every level.

Challenges regarding transitional mental healthcare

Policy and organisational level

Improving transitional care has been on the policy agenda in different European countries for some time now; however, it has been one of a number of competing priorities. Furthermore, there has been a gap between policy and implementation in practice, insufficient research regarding transition, and a lack of transition protocols guiding transitional care of service providers.Reference Paul, Street, Wheeler and Singh16

Historically, the way in which mental health services have been structured, with separate facilities for children/adolescents and adults is a significant bottleneck to transitional care.Reference Signorini, Singh, Marsanic, Dieleman, Dodig-Curkovic and Franic13 Eligibility thresholds for referral to CAMHS and AMHS often differ; thereby causing young people to fall through the care gap.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4,Reference Lamb and Murphy18 Furthermore, the CAMHS-AMHS interface is characterised by different cultural approaches, a lack of communication and doubts about AMHS staff being proficient in managing young peoples' care.Reference McLaren, Belling, Paul, Ford, Kramer and Weaver19

Waiting lists form another major barrier in the provision of mental healthcare to youth and young adults.Reference Paul, Ford, Kramer, Islam, Harley and Singh20,Reference Vandenbroeck, Dechenne, Becher, Eyssen and Van Den Heede21 As a result, young people presenting with a mental health problem at 17 years of age are often referred directly to AMHS because the waiting time for CAMHS coincides or exceeds their 18th birthday, i.e. the transition boundary. Adult services, in turn, hesitate to treat these young people before 18 years of age, because the expertise or the adjusted setting for this patient group is lacking, or because internal or external regulations prevent care providers from forming a treatment plan. Young people who have attended CAMHS but find themselves on a long waiting list for AMHS – usually with no interim support in place – describe this as highly anxiety-provoking.Reference Street, Walker, Tuffrey and Wilson22

Another challenge is the lack of training requirements for care providers and variations in the content of training programmes.Reference Hendrickx, De Roeck, Russet, Dieleman, Franic and Maras23,Reference Russet, Humbertclaude, Dieleman, Dodig-Curkovic, Hendrickx and Kovac24 The knowledge clinicians in either child/adolescent or adult speciality acquire about young people largely depends on whether they are provided with adequate training on psychopathology of adolescents. A lack of confidence amongst mental health practitioners to work with young people in transition is an area of concern frequently identified by young people.Reference Street, Walker, Tuffrey and Wilson22

Healthcare financing is another policy challenge affecting the care trajectories of young people. Gaining financial responsibility at the age of majority can have a real effect on the provision of care in some countries. Differences in financial benefits for minors versus adults may relate to the cost of a consultation, the possibility to organise family therapy or the reimbursement of medication. Some health insurance policies provide partial reimbursement for therapy sessions for young people up to 18 years of age, but not for (young) adults. Hence, although they have reached the age of majority and the ability to organise their mental healthcare independently, young people often still remain financially dependent on their parents to pay for their care. If there is a serious disruption in the parent–child relationship, the continuation of care at a new mental health service may be in jeopardy.

Service level

Different treatment approaches at CAMHS and AMHS pose a significant challenge. In CAMHS, treatment is reported to be more family-oriented and holistic, inherent to the legal position of the parents, whereas in adult psychiatry, individual patients and their symptoms are the main focus. These differences are described by young people and their families as an important reason for discontinuing care in AMHS.Reference Reale and Bonati25 This perception may also lead to hesitance among CAMHS clinicians to refer young people.Reference Paul, Street, Wheeler and Singh16 In addition, the lack of common registration and information systems hampers the exchange of information between services.Reference Coppens, Vermet, Knaeps, De Clerck, De Schrijver and Matot17

Level of the individual

Youth and young adults

Characteristics specific to young people can influence the transition process. Having a severe and enduring mental illness, e.g. schizophrenia, enhances the chance of being referred to AMHS, whereas having a neurodevelopmental disorder decreases the chance of being referred. Moreover, receiving medication, having a history of hospital admissions and living with both parents or independently are all variables that can determine whether a young person is more likely to be referred.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4,Reference McNicholas, Adamson, McNamara, Gavin, Paul and Ford26Reference Leavey, McGrellis, Forbes, Thampi, Davidson and Rosato28

Even if a transition to adult services has been carefully planned, a young person's urge for autonomy and self-determination may influence their care trajectory. For example, the young person can decide to abandon psychological care or to not make the transition to AMHS, even when a referral has been made.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4,Reference McNicholas, Adamson, McNamara, Gavin, Paul and Ford26,Reference Leavey, McGrellis, Forbes, Thampi, Davidson and Rosato28,Reference Breland, McCarty, Zhou, McCauley, Rockhill and Katon29 The reasons for this are diverse: young people want to solve their problems themselves, or they may not want to repeat their story to a new clinician. The lack of information about mental healthcare, the stigma associated with mental health problems,Reference Davis and Butler30,Reference McNamara, Coyne, Ford, Paul, Singh and McNicholas31 anxiety about how confidentiality is handled and the physical accessibility of mental health services can all act as barriers to seeking help or accessing care.Reference Gulliver, Griffiths and Christensen32 Young people have also suggested that further investments should be made to improve the accessibility of mental healthcare and have pointed out to the importance of e-health.Reference Coppens, Vermet, Knaeps, De Clerck, De Schrijver and Matot17

Furthermore, service (dis)engagement is influenced by an identity change that accompanies the transition from CAMHS to AMHS. Besides adopting an adult identity, transitioning to AMHS implies adopting a new illness identity.Reference McNamara, Coyne, Ford, Paul, Singh and McNicholas31 Although CAMHS is associated with temporary psychopathology, AMHS is associated with having a severe and enduring mental illness, as this is often the prerequisite for being referred to or accepted by AMHS.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4 Disengagement can be attributed to failure in adopting a new illness identity, an illness identity that is incompatible with AMHS service remit or fractious professional relationships between CAMHS and AMHS during the transition, which causes anxiety and uncertainty to the young person.Reference McNamara, Coyne, Ford, Paul, Singh and McNicholas31

Although young people want to make autonomous decisions and are concerned about the confidentiality of information, the loss of parental or other psychosocial support is an important negative factor for care continuation or adequate help-seeking behaviour.Reference Gulliver, Griffiths and Christensen32

The relationship of trust with the CAMHS clinician must not be forgotten, as at the transition to adult services this relationship comes to an end. Entering into a new social and trust relationship at an AMHS can be daunting for young people. On the other hand, a positive relationship with the new clinician can enable the development of other positive relationships.Reference Hiles, Moss, Wright and Dallos33

The parents and important others

The parents' position changes the moment a young person becomes an adult, as their legal right to be involved in the care for their child is no longer there. Furthermore, because of the distinct service cultures, CAMHS and AMHS clinicians' training regarding family involvement differs considerably; in adult psychiatry, the focus is more on the individual, not the family.Reference Reale and Bonati25,Reference Singh, Evans, Sireling and Stuart34

The need to give a young person autonomy to make their own decisions regarding treatment can be a difficult process for the parents, who may also require additional support.Reference Rodriguez-Meirinhos, Antolin-Suarez and Oliva35 Many parents and carers would like to remain involved in the treatment, although they respect their child's wishes and their right to privacy.Reference Jivanjee, Kruzich and Gordon36,Reference Coyne, McNamara, Healy, Gower, Sarkar and McNicholas37 They also want psychoeducation about how to deal with their child and to attend parent support groups where they can benefit from increased knowledge, shared recognition and exchange of experiences.Reference Stapley, Midgley and Target38

The clinician

Mental healthcare transition should be a planned and efficient process. This implies starting on time to prepare individuals and their families for the transition. Some authors state that this process should start at 14 years of age,Reference McDonagh39 whereas others stress that it should start at least 1 year before the transition boundary.Reference Suris, Rutishauser and Akre40 For the process to be efficient, by the time the young person reaches the transition boundary it should be clear whether they need further care or not, and whether this care will be continued in CAMHS or whether a referral to AMHS, or another type of service (e.g. private practice), is appropriate. In any case, the clinician should consider all these options to make the best possible decision.

To date, there is no consensus about this decision-making process, and the follow-up trajectory of the young person thus depends on the practitioner's clinical judgement. Because of the lack of transition protocols, this clinical judgement is not usually based on a structured assessment of transition-relevant factors, such as severity of symptoms, the patient's motivation regarding further mental healthcare and the risk and protective factors in several psychosocial domains.Reference Signorini, Singh, Marsanic, Dieleman, Dodig-Curkovic and Franic13 CAMHS and AMHS should, therefore, be supported in the initiation, advancement and supervision of the transition process. The National Institute for Health and Care Excellence and Cleverley et al have produced guidelines on transition.41,Reference Cleverley, Rowland, Bennett, Jeffs and Gore42 The Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare (MILESTONE) project developed an instrument for assessing transition, the Transition Readiness and Appropriateness Measure, a process called managed transition, which uses the Transition Readiness and Appropriateness Measure to guide clinicians' actions, and training regarding transition.Reference Singh, Tuomainen, de Girolamo, Maras, Santosh and McNicholas43,Reference Tuomainen, Schulze, Warwick, Paul, Dieleman and Franic44

The transition process is also influenced by professional relationships between CAMHS and AMHS. Clinicians' decisions regarding referrals may depend on the (not always comprehensive) knowledge they have of the other care provider and their prior experience with the service and clinician.Reference Aebi, Kuhn, Metzke, Stringaris, Goodman and Steinhausen45 Furthermore, incompatible beliefs about who is responsible for the different steps during the transition process, lack of confidence in AMHS staff in managing young people and different cultural approaches in service delivery may also impede the transition process.Reference Lamb and Murphy18,Reference McNamara, McNicholas, Ford, Paul, Gavin and Coyne46

Improving transition through specific interventions

Some of the above-mentioned challenges provide directions as to what should be done in clinical practice and at policy level to improve the transition process. On the other hand, effect studies are lacking and there is a need for longitudinal research about different transition trajectories and health outcomes.Reference Paul, Street, Wheeler and Singh16,Reference Embrett, Randall, Longo, Nguyen and Mulvale47 Although care trajectories, transition experiences and quality of transition have been investigated within the UK,Reference Singh, Paul, Ford, Kramer and Weaver1 Ireland,Reference Leavey, McGrellis, Forbes, Thampi, Davidson and Rosato28,Reference McNamara, McNicholas, Ford, Paul, Gavin and Coyne46 the USA and Australia,Reference Paul, Street, Wheeler and Singh16 no research has been performed about the care and transition trajectories (both the experiences and the quality) in relation to their effects on mental health in the long term. The MILESTONE project contains a prospective study on the longitudinal outcomes and experiences of young people reaching the transition boundary within eight different European countries, taking into account differences in the organisation of mental health systems, the age at which transition takes place and the available services.Reference Singh, Tuomainen, de Girolamo, Maras, Santosh and McNicholas43,Reference Tuomainen, Schulze, Warwick, Paul, Dieleman and Franic44 The MILESTONE study will result in evidence- and practice-based guidelines that clinicians can follow to support their decision-making and direct their actions.

To prevent young people from falling through the care gap and to tailor services to their specific needs, new service models have been developed. Examples include mental health services in Australia, Canada and some European countries that target the age group of 0–25 years. Besides solely focusing on mental health, these services take into account all aspects of psychosocial functioning.Reference McGorry, Goldstone, Parker, Rickwood and Hickie48Reference Halsall, Manion, Iyer, Mathias, Purcell and Henderson50 Despite the aim of trying to solve the problem of a shortage of tailored services for this target group, some of these services are faced with an additional transition boundary: the first around 12 years of age and the second around 25 years of age, both of which need to be optimally managed. At the current time, it is too early to conclude if these models provide an answer to the longstanding problems of transition barriers.

An alternative approach to bridge the transition gap is by improving the liaison between CAMHS and AMHS, but keeping services as they currently exist. To achieve this, diverse models to enhance joint-working between services, including transition clinics and transition coordinators have been suggested.Reference Maitra, Jolley, Reder, McClure and Jolley5154

Improving clinical practice

Policy makers should consider implementing the topic of transition in the training program of clinicians as 94% of European psychiatric trainees indicated further training regarding transition is necessary.Reference Hendrickx, De Roeck, Russet, Dieleman, Franic and Maras23 Furthermore the distinct split between CAMHS and AMHS should be revised as well as the separate funding, which may hamper collaborative efforts.Reference Signorini, Singh, Marsanic, Dieleman, Dodig-Curkovic and Franic13,Reference Cleverley, Rowland, Bennett, Jeffs and Gore42

To ensure that the transition process is better managed, the transition should be mentioned to the young person well in advance,Reference Coppens, Vermet, Knaeps, De Clerck, De Schrijver and Matot17,41,Reference Cleverley, Rowland, Bennett, Jeffs and Gore42 whereby the young person should be involved in the decision-making during all phases of the process.Reference Street, Walker, Tuffrey and Wilson22,Reference Cleverley, Rowland, Bennett, Jeffs and Gore42,Reference Broad, Sandhu, Sunderji and Charach55 Guidelines and criteria regarding optimal transition can guide clinicians during their clinical practice.Reference Singh, Paul, Ford, Kramer, Weaver and McLaren4,41,Reference Cleverley, Rowland, Bennett, Jeffs and Gore42 Furthermore, standardised assessment of the young persons' needs when approaching the transition boundary should become routine, although it is rarely done nowadays.Reference Signorini, Singh, Marsanic, Dieleman, Dodig-Curkovic and Franic13

Conclusion

The transition from CAMHS to AMHS is an important process for young people with mental health problems. Literature shows that continuation of care is a complex process, with important players at policy and organisational levels, service level and at the level of individuals: patients, their families and healthcare providers. At the moment, specific programmes for young people are being developed. However, research such as the MILESTONE project is needed to support these interventions in an evidence-based manner.

Funding

The MILESTONE project has received funding from the European Union's Seventh Framework Programme for research, technological development and demonstration under grant agreement no. 602442. This paper reflects 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 had no role in the study design, in the writing of the protocol or in the decision to submit the paper for publication.

S.P.S. is part-funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care WM (CLAHRC-WM). The views expressed are those of the authors and not necessarily those of the CLAHRC-WM collaborative organisations, the NIHR or the Department of Health.

Acknowledgements

We would like to thank Marc Hermans, past president of the European Union of Medical Specialists (UEMS) board of psychiatry, for inviting us to join the UEMS working group regarding transition. We are also very grateful for the whole UEMS working group on transition for their interest and plans to make transition part of the training of psychiatrists throughout Europe. Furthermore, we would like to thank all members of the MILESTONE consortium.

About the authors

Gaelle Hendrickx is a PhD student at Department of Neurosciences, Centre for Clinical Psychiatry, KU Leuven, Belgium, and a research associate with the MILESTONE consortium. Veronique De Roeck is a is a researcher at the Department of Neurosciences, KU Leuven, Belgium, and a research associate with the MILESTONE consortium. Athanasios Maras is Director of Yulius Academy, Yulius Mental Health Organization, The Netherlands, and a principal investigator with the MILESTONE consortium. Gwen Dieleman is a child and adolescent psychiatrist and clinical research coordinator at Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center, The Netherlands, and a principal investigator with the MILESTONE consortium. Suzanne Gerritsen is a PhD student at the Department of Child and Adolescent Psychiatry and Psychology, Erasmus Medical Center, The Netherlands, and a research associate with the MILESTONE consortium. Diane Purper-Ouakil is a psychiatrist at the Child and Adolescent Psychiatry Unit of the University Hospital of Montpellier, France, and a principal investigator with the MILESTONE consortium. Frederick Russet is a psychologist at the Child and Adolescent Psychiatry Unit of the University Hospital of Montpellier, France, and research associate with the MILESTONE consortium. Renate Schepker is a psychiatrist at the Centre for Psychiatry South-Wuerttemberg, Germany, and a principal investigator with the MILESTONE consortium. Giulia Signorini is a researcher at the Psychiatric Epidemiology and Evaluation Unit of Saint John of God Clinical Research Center, Italy, and research associate with the MILESTONE consortium. Swaran Preet Singh is Head of Mental Health and Wellbeing at Warwick Medical School, University of Warwick, UK, and Chief Investigator with the MILESTONE consortium. Cathy Street is the Patient and Public Involvement Lead at Warwick Medical School, University of Warwick, UK, and at the MILESTONE consortium. Helena Tuomainen is a senior research fellow at Warwick Medical School, University of Warwick, UK, and Scientific Research Manager with the MILESTONE consortium. Sabine Tremmery is a professor at the Department of Neurosciences, KU Leuven, Belgium, and a principal investigator with the MILESTONE consortium.

Footnotes

Declaration of interest: None.

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