Lost in Transition: Recommendations for transition in mental health and description of two innovative Portuguese initiatives

Introduction - Transition in Mental Health

The process of transition from paediatric care to adult care usually occurs between 16 and 19 years.¹ Psychiatric disorders typically appear early in an individual’s development with a median around 14.5 years old. Early identification and proper referral to an Adult Mental Health Service (AMHS) could be important for better management, especially for severe mental disorders.²

Once young people reach the upper age limit of child and adolescent mental health services, clinicians should advise patients and their parents about the type of care, if required, that will be needed going forward.³ If continuation of mental health care is deemed necessary, a discussion must take place between the clinician, the patient and his or her carers to decide where such care should be provided: either continued at a Child and Adolescent Mental Health Service (CAMHS) (if for a brief period, to conclude an ongoing treatment) or transferred to an AMHS. This can help tackle the existing treatment gap for people with mental disorders, representing the absolute difference between the true prevalence of a disorder and the treated proportion of individuals affected by it. This treatment gap exceeds 50% worldwide, but it is not distributed equally among disorders or between countries (in low-income countries it can reach 90%).^4,5

The transition cannot be defined only as a process of transfer from one service to another, but as an intentional and planned process, meeting the medical, psychosocial and educational needs of young people with chronic health conditions, including some psychiatric diagnoses.⁶ Some of the factors that hinder the transition correspond to differences in referral criteria, as well as the constitution and configuration of services, or even in the therapeutic approach.⁷ In contrast, facilitators of the transition process include scheduling at least one meeting between professionals of the two services, continuity in the therapeutic relationship, reduced waiting time for consultation in the adult service, communication between services and flexibility in the age of transition.⁸

Why is it relevant to think about the transition of services?

Failures in the transition process are frequent and lead to patients being lost to follow-up at a particularly vulnerable age. This group presents several challenges: transition from adolescent age to adulthood is characterised by physiological, psychological and social changes that can be accompanied by greater difficulties in young people with mental health problems when compared to their peers.^9,10 On the one hand, serious psychiatric problems, such as psychosis, frequently first occur in this age group,^11–15 and, on the other hand, psychiatric conditions in adolescence are often polysymptomatic and undifferentiated.^16,17 Also, irregular monitoring and even dropouts by young adults are frequent, so the transition should be made appropriately to minimise this risk.^16,17 In fact, around 30% to 84% of young people have a discontinuity of their care in this age group,^18–20 with one of the contributing factors being the lack of awareness by clinicians and parents of patients’ suicidal behaviour.²¹ However, this may not be associated with a deterioration in their mental health.^21,22 Conversely, patients with the most severe mental health issues have an increased likelihood of continuing to receive care. This potentially raises the questions of cost-effectiveness of investments in improving transitional care for all CAMHS users, especially in times of rising healthcare costs, and that targeting subgroups with more severe issues might be a better approach.²²

Regardless, the transition to adult services often causes dissatisfaction for the patient and their families and may result in them being lost to follow-up.⁸

This paper aims to reflect upon transition practices in mental health services, specifically “across borders”, from Child and Adolescent Psychiatry (CAP) to General Adult Psychiatry (GAP). To inform this opinion piece we conducted an unsystematic search of the literature in the database Medline using the terms “transition”, “child and adolescent psychiatry” and “adult psychiatry”. We also draw on our own experiences of working in CAMHS services in Portugal to illustrate how child and adolescent mental health services should communicate with adult mental health services by presenting two Portuguese mental health transition projects that we believe demonstrate best practices.

The pathways for change

The need for an optimal transition process, rather than simply a transfer of care – its end result – has been recognised widely and supported by evidence collected over the past decades. Literature suggests that poorly planned transitions may contribute to an increased risk of non-adherence to treatment, loss to follow-up, and poorer health outcomes, as well as significant economic costs.²³ Figure 1 features important factors for optimal transitioning. It was created by the authors, based on a literature review by Leavey et al in the context of the IMPACT study.²³ An example of a tool that can help with the transition process is the Transition Readiness and Appropriateness Measure (TRAM). It evaluates the state of readiness and appropriateness for transitioning, by bringing attention to the barriers that hinder a successful transition and educating medical professionals about how to achieve transition. This enables them to pinpoint specific areas for collaboration at both ends of the transfer boundary, thus facilitating a smoother transition for the young person.²⁴

Figure 1.Features of an optimal transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS).

However, despite some general guidelines on this topic,²⁵ transition protocols, if available, vary significantly across countries and regions, and no current existing model appears to fully respond to the identified needs of patients in transition.²⁶ Notably, even in countries like England,²⁷ Northern Ireland²³ or Switzerland²⁸ (where resources are more widely available), if the transition process lacks efficacy it may result in significant loss to follow-up.^7,14 Nonetheless, it seems that individuals on antipsychotic or Attention Deficit Hyperactivity Disorder (ADHD) medication are less likely to be lost during transition, as well as those referred to specific psychiatric teams.²³

At this point, no existing model has proven superior in improving transition outcomes,¹⁴ and current recommendations are based mostly on expert opinion and small, predominantly qualitative, studies. Table 1 was elaborated by the authors, summarizing possible pathways for an adequate transition process between CAMHS and AMHS, as suggested by expert opinions, case studies or already implemented projects. There is consensus that timely transition planning, in particular, actively involving the patient and caregivers, should be an integral part of the care pathway of young patients. Currently, the lack of coordination between services constitutes a very important barrier to continuity of care,^{15,25,26,29–31} and both CAMHS and AMHS need to share responsibility for supporting transitions.

At the same time that implementation of the best available evidence and guidelines would be very helpful, pushing for adequate training has the potential to improve the present issues surrounding this topic. The Section of Psychiatry of the European Union of Medical Specialists and the European Federation of Psychiatric Trainees have issued statements and recommendations regarding training in both GAP and CAP, highlighting the importance of exchanges of knowledge and training between both fields.^33,34 According to a systematic review regarding GAP and CAP training across Europe, three distinctive training models were identified: 1) a comprehensive, shared training curriculum catering to general skills; b) completely segregated training programs; c) blended approaches that amalgamate various methods. These findings strongly indicate that the much sought-after standardization in training methodologies remains unrealized, potentially acting as a hurdle to enhancing the quality of transitional care. Notably, the integration of transition-focused training has only recently garnered attention. This underscores the pressing need to develop evidence-based training methodologies for transitional care, encompassing both CAP and GAP training, thereby addressing the current timeliness and significance of this endeavour across Europe.³⁵

Two innovative Portuguese initiatives

In this section, we want to draw from our personal experience working in the Portuguese setting, reflecting upon its present situation regarding articulation between general adult psychiatry and child and adolescent psychiatry and share endeavours aimed at improving this situation.

In Portugal, transition is usually achieved by referral from CAMHS to AMHS. Often, this can be done directly through a system of same-hospital internal referrals, if the services are part of the same institution. If AMHS and CAMHS do not happen to be part of the same hospital (which is common, given that there are fewer CAMHS than AMHS) and procedures are not in place to streamline referrals, the referral will need to come from the patient’s General Practitioner. Despite this situation becoming less common in recent years, there is a generalized sense that transition from CAMHS to AMHS is seldom efficient and usually leads to a loss of continuity of care. This is reinforced by poor integration between CAMHS and AMHS which operate in the same catchment area.

Fortunately, over the last decade, an increasing number of services have been looking at ways to address these issues. Below we present two noteworthy initiatives that have found success in this regard to illustrate the possibility of addressing gaps, even when the resources available are limited.

Hospital Prof. Doutor Fernando Fonseca and Semente Program

Hospital Prof. Doutor Fernando Fonseca is located in Amadora, on the outskirts of Lisbon, Portugal. Its AMHS provides mental health care for about 350.000 people. It was established about 25 years ago. Since the inception of the AMHS, a community-minded approach has been the mainstay of the service, looking at effective and meaningful ways of working with community stakeholders. Years later, when CAMHS was being set up the same principles were applied. Transition was an early concern in the cooperation between the CAMHS and the AMHS, leading to it becoming one of the touchstones of the CAMHS implementation. Transition of patients is operationalised through monthly meetings between the CAMHS and each of four Community Mental Health Teams of the AMHS. In these meetings, cases of concern are discussed, including (but not limited to) the direct handover of patients that have reached the age limit for CAMHS, signalling of possible psychopathology to assess in children or parents of individuals that are already within the caseload of one of the services, and working out timely interventions for both children and parents within the caseload. Despite a lack of formal evaluation for this process, there is a consensus among professionals that it reduces the attrition of transition and strengthens the bonds and coordination between services. This helps to achieve more tailored and helpful interventions for patients and, not infrequently, their families.

At the same time, this framework of cooperation between services is further supported and deepened by the Semente Program, which has been developed over the last decade. It intends to identify and intervene in children of parents with mental illness (COPMI), especially when major psychopathology is present. It is increasing its scope of action, entailing group interventions aimed exclusively at children with increased risk, and family interventions (using the Child Talks methodology^36,37) aimed at all families that fulfil the criteria. More recently, it has aimed to develop a perinatal mental health response, that provides a range of levels of intervention to different situations that may arise in this period. Despite the impact of the COVID-19 pandemic, which affected the scheduling for implementation, it was possible to identify and develop interventions aimed at patients already on the AMHS caseload. The next steps will aim to coordinate efforts between AMHS and primary care settings. Studies to evaluate the impact and development of this project are ongoing.

Centro Hospitalar Psiquiátrico de Lisboa e Hospital Dona Estefânia – Unidade Partilhada | Shared Service for Teens and Young Adults

This project aims to recreate some initiatives undertaken in other countries in Portugal. Centro Hospitalar Psiquiátrico de Lisboa (Lisbon Psychiatric Hospital Centre) and Centro Hospitalar Universitário de Lisboa Central (Central Lisbon University Hospital Centre), specifically the Child and Adolescent Psychiatry Unit of Hospital Dona Estefânia, came together to develop the Serviço Partilhado para Adolescentes e Jovens Adultos (Shared Service for Teens and Young Adults). This a joint initiative between two distinct institutions realized through an inpatient service, directed at patients between 15 and 25 years of age. This focus stems from the realization that psychopathology of late adolescence and early adulthood overlap, and it is known that most of these conditions manifest for the first time in this age group.

The Shared Service for Teens and Young Adults is composed of a team of Child and Adolescent Psychiatrists and Adult Psychiatrists who work together, collaborating and discussing about which therapeutic interventions to implement for each patient. It represents an advance in diagnosing and treating the most severe psychopathology of late adolescence/early adulthood, aiming at primary prevention and early detection of the disease, and extending its action through most levels of healthcare. It also represents a high-quality setting for specialised training and research.

Conclusions

Strong evidence of the effectiveness of transitional care models between CAMHS and AMHS is lacking. For the vast majority, the transition from CAMHS to AMHS is poorly planned, poorly executed and the patient experience is poor. The importance of explicitly considering childhood disorders in understanding mechanisms for improving access to mental health services is a crucial point in this process. Adequate and standardized training may be a fundamental way to improve the present issues surrounding this topic.

The two transition projects presented demonstrate some of the recommendations summarised, namely the need for continuity of care, the existence of referral protocols and the provision of coordinated care. Furthermore, we presented the Semente program since it shows how the referral process can also be done from AMHS to CAMHS. Children of patients with psychiatric disorders must be promptly referred to ensure early intervention.

Better understanding and development of communication pathways, continuity, collaboration and coordination of care, referral protocols, and service delivery might contribute to a more robust design of transitional mental health care, thus making it more accessible, acceptable and efficient.

Ethical Declaration

No ethical clearance was required for this article.

Conflicting Interests

We declare that Filipa Santos Martins, Luís Afonso Fernandes and Mário J. Santos hold editorial positions in the International Journal of Psychiatric Trainees; they have all signed a non-interference statement and have resigned from any involvement in the editorial process of this article.

Role of Funding

No funding was received to help write or publish this article.

Author Contributions

We declare that all authors contributed to the writing and revision of the manuscript in its various stages. Beatriz Jorge has coordinated this project and submitted the final version.