Predictors of transitioning to adult mental health services and associated costs: a cross-country comparison.

BACKGROUND: Young people are at risk of falling through the care gap after leaving child and adolescent mental health services (CAMHS) despite an ongoing need for mental health support. Currently, little is known about the predictors of transitioning to adult mental health services (AMHS), and associated healthcare and societal costs as young people cross the transition boundary. OBJECTIVE: To conduct a secondary data analysis exploring predictors of transitioning or falling through the gap and associated costs. METHODS: Data were used from a longitudinal study, which followed young people from seven European countries for 2 years after reaching their CAMHS boundary. Predictors of transitioning (including sociodemographic and clinical variables) and longitudinal resource use were compared for 488 young people who transitioned to AMHS versus those who fell through the gap. FINDINGS: Young people were more likely to transition to AMHS if they were severely ill. Those from Italy, the Netherlands and the UK were more likely to fall through the gap than transition to AMHS. Healthcare costs fell for all young people over the study, with a sharper decrease for those who fell through the gap. CONCLUSIONS: Total healthcare costs fell for all participants, indicating that the intensity of mental health support reduces for all young people as they cross the CAMHS boundary, regardless of clinical need. CLINICAL IMPLICATIONS: It is important that alternative forms of mental health support are available for young people who do not meet the AMHS care threshold but still have mental health needs after leaving CAMHS.

Healthcare costs for young people transitioning the boundary between child/adolescent and adult mental health services in seven European countries: results from the MILESTONE study.

BACKGROUND: The boundary between services for children and adolescents and adults has been identified as problematic for young people with mental health problems. AIMS: To examine the use and cost of healthcare for young people engaged in mental healthcare before and after the child/adolescent and adult service boundary. METHOD: Data from 772 young people in seven European countries participating in the MILESTONE trial were analysed. We analysed and costed healthcare resources used in the 6-month period before and after the service boundary. RESULTS: The proportion of young people engaging with healthcare services fell substantially after crossing the service boundary (associated costs €7761 pre-boundary v. €3376 post-boundary). Pre-boundary, the main cost driver was in-patient care (approximately 50%), whereas post-boundary costs were more evenly spread between services; cost reductions were correlated with pre-boundary in-patient care. Severity was associated with substantially higher costs pre- and post-boundary, and those who were engaged specifically with mental health services after the service boundary accrued the greatest healthcare costs post-service boundary. CONCLUSIONS: Costs of healthcare are large in this population, but fall considerably after transition, particularly for those who were most severely ill. In part, this is likely to reflect improvement in the mental health of young people. However, qualitative evidence from the MILESTONE study suggests that lack of capacity in adult services and young people's disengagement with formal mental health services post-transition are contributing factors. Long-term data are needed to assess the adverse long-term effects on costs and health of this unmet need and disengagement.

Are Psychiatrists Trained to Address the Mental Health Needs of Young People Transitioning From Child to Adult Services? Insights From a European Survey.

BACKGROUND: In mental health, transition refers to the pathway of young people from child and adolescent to adult services. Training of mental health psychiatrists on transition-related topics offers the opportunity to improve clinical practice and experiences of young people reaching the upper age limit of child and adolescent care. METHODS: National psychiatrist's organizations or experts from 21 European countries were surveyed 1/ to describe the status of transition in adult psychiatry (AP) and child and adolescent psychiatry (CAP) postgraduate training in Europe; 2/ to explore the amount of cross-training between both specialties. This survey was a part of the MILESTONE project aiming to study and improve the transition process of young people at the service boundary. RESULTS: Transition was a mandatory topic in the AP curriculum of 1/19 countries (5%) and in the CAP curriculum of 4/17 countries (24%). Most topics relevant for transition planning were addressed during AP training in 7/17 countries (41%) to 10/17 countries (59%), and during CAP training in 9/11 countries (82%) to 13/13 countries (100%). Depending on the training models, theoretical education in CAP was mandatory during AP training in 94% (15/16) to 100% of the countries (3/3); and in AP during CAP training in 81% (13/16) to 100% of the countries (3/3). Placements were mandatory in CAP during AP training in 67% (2/3) to 71% of the countries (12/17); and in AP during CAP training in 87% (13/15) to 100% of the countries (3/3). DISCUSSION AND CONCLUSION: Specific training about transition is limited during CAP and AP postgraduate training in Europe. Cross-training between both specialties offers a basis for improved communication between child and adult services but efforts should be sustained in practical training. Recommendations are provided to foster further development and meet the specific needs of young people transitioning to adult services.

A cross-cultural qualitative study of the ethical aspects in the transition from child mental health services to adult mental health services.

BACKGROUND: Transitioning from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) raises novel ethical aspects for healthcare professionals, as well as for young people, their parents and carers. METHOD: Focus groups were conducted in Croatia, Ireland and the United Kingdom with youth mental health groups and youth representatives with no mental health (MH) remit. One hundred and eleven participants, aged from 16 to 60 years, contributed to discussions. RESULTS: Perpetuation of stigma, autonomy and decision-making were central themes as both enablers and deterrents of successful transition. The tension between professional (and at times parental) paternalism and young persons' growing autonomy was well captured in the themes; (a) desired practice, (b) who should decide, (c) the process of decision-making and (d) potential harm(s). CONCLUSIONS: This study provides insight into the ethical values, particularly autonomy and collaboratively working, which people expect to underpin the transition between CAMHS and AMHS. KEY PRACTITIONER MESSAGE: Engaging young people early in making decisions about their future care can enhance trust between practitioner and the young person. In addition to diagnosis, a number of factors (such as moving home; waiting lists and stigma) may need to be taken into account when considering the direction of future health care. When possible, alternatives to AMHS should be considered if considered by the young person to be a less-stigmatising treatment option.

[Management of Transition - Problems and Suggestions for Improvement from Psychiatric Outpatient Clinics]. / Übergangsmanagement ­ Probleme und Optimierungsvorschläge aus den Psychiatrischen Institutsambulanzen (PIA).

The structure of psychiatric outpatient clinics with multi-professional treatment teams provides a suitable frame for a successful transition from child to adult treatment settings. At present, however, the management of transition, especially for severely mentally ill adolescents, is unsatisfactory. In order to optimize conditions of transition, the following measures are proposed:▪ use of structured transfer sheets▪ round table conferences▪ shared trainings of child and adult psychiatrists▪ development of specific consultation hours for adolescents in transition; financial funding has to be established by health insurances.

Protocol for a cohort study of adolescent mental health service users with a nested cluster randomised controlled trial to assess the clinical and cost-effectiveness of managed transition in improving transitions from child to adult mental health services (the MILESTONE study).

INTRODUCTION: Disruption of care during transition from child and adolescent mental health services (CAMHS) to adult mental health services may adversely affect the health and well-being of service users. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare) study evaluates the longitudinal course and outcomes of adolescents approaching the transition boundary (TB) of their CAMHS and determines the effectiveness of the model of managed transition in improving outcomes, compared with usual care. METHODS AND ANALYSIS: This is a cohort study with a nested cluster randomised controlled trial. Recruited CAMHS have been randomised to provide either (1) managed transition using the Transition Readiness and Appropriateness Measure score summary as a decision aid, or (2) usual care for young people reaching the TB. Participants are young people within 1 year of reaching the TB of their CAMHS in eight European countries; one parent/carer and a CAMHS clinician for each recruited young person; and adult mental health clinician or other community-based care provider, if young person transitions. The primary outcome is Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) measuring health and social functioning at 15 months postintervention. The secondary outcomes include mental health, quality of life, transition experience and healthcare usage assessed at 9, 15 and 24 months postintervention. With a mean cluster size of 21, a total of 840 participants randomised in a 1:2 intervention to control are required, providing 89% power to detect a difference in HoNOSCA score of 0.30 SD. The addition of 210 recruits for the cohort study ensures sufficient power for studying predictors, resulting in 1050 participants and an approximate 1:3 randomisation. ETHICS AND DISSEMINATION: The study protocol was approved by the UK National Research Ethics Service (15/WM/0052) and equivalent ethics boards in participating countries. Results will be reported at conferences, in peer-reviewed publications and to all relevant stakeholder groups. TRIAL REGISTRATION NUMBER: ISRCTN83240263; NCT03013595 (pre-results).

Report of an initial pilot study on the feasibility of using the MacArthur competence assessment tool for clinical research in children and adolescents with attention-deficit/hyperactivity disorder.

INTRODUCTION: The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) was used in children and adolescents with attention-deficit/hyperactivity disorder (ADHD) and co-morbid oppositional defiant disorder (ODD) and in their parents. The aims were to test feasibility and to determine children's understanding of the elements of disclosure for a clinical drug trial and their competence to assent. METHOD: The contents and language of MacCAT-CR were adapted to be age appropriate for the children. Twelve children (mean age, 9.87 [7.7-12.2]; mean intelligence quotient [IQ], 97 [72-122]) and either the mother or father of each child were interviewed. Psychologists rated the interviews and, in addition to MacCAT-CR, competence was assessed by trained clinicians. RESULTS: The MacCAT-CR was practicable, and the time required was acceptable. Interrater reliability was excellent in children. Children performed less well than parents on this test (children;s vs. parents' scores: Understanding 5.86 vs. 9.08, appreciation 2.64 vs. 4.96, reasoning 3.05 vs. 4.63, respectively). Whereas clinicians assessed all children as competent, lack of competence became apparent in the MacCAT-CR. CONCLUSIONS: The practicability and the interrater reliability suggest that the MacCAT-CR is feasible in children, but the question of whether competence is assessed validly remains unsolved in the absence of external validation. The differences between assessment by clinicians and the low scores obtained in the MacCAT-CR suggest that children may give assent even if they do not understand completely. The results of this initial pilot study may help in the planning of further investigations intended to improve information about studies and assessment of assent/consent.

"...because I am something special" or "I think I will be something like a guinea pig": information and assent of legal minors in clinical trials--assessment of understanding, appreciation and reasoning.

BACKGROUND: The aim of this study is to assess and evaluate the capacities for understanding, appreciation and reasoning of legal minors with psychiatric disorders and their parents and their competence to consent or assent to participation in clinical trials. The beliefs, fears, motivation and influencing factors for decision-making of legal minors and parents were also examined. METHODS: Using the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), an instrument developed for adults whose capacities to consent are unclear, we provided information about clinical trials and assessed understanding, appreciation and reasoning. We adapted this tool for legal minors and examined 19 children and adolescents between the ages of 7 and 15 with attention deficit/hyperactivity disorder (ADHD) or ADHD combined with oppositional defiant disorder (DSM-IV 314.00/314.01/312.8) enrolled in clinical trials. Parents were also examined using the MacCAT-CR. RESULTS: Facts such as the procedures involved in trials or their duration were well understood by legal minors, but more abstract issues like the primary purpose of the trial were not understood by children and adolescents or by many parents. Legal minors also had difficulties understanding the nature of placebo and the probability of receiving placebo. Children's and adolescents' decisions were influenced by fears about their disorder worsening and by problems in their relationship with their parents. Parents wanted the best therapy for their children in order to minimize problems in school. CONCLUSION: Legal minors and parents need to be informed more precisely about specific issues like placebo and the primary purpose of trials. In general, the reasoning of children and adolescents was influenced by their experience with their disorder and decision making was based on reasonable arguments. Their fears were based on everyday experiences such as school performance or family relationships.