Cohort profile: demographic and clinical characteristics of the MILESTONE longitudinal cohort of young people approaching the upper age limit of their child mental health care service in Europe.

PURPOSE: The presence of distinct child and adolescent mental health services (CAMHS) and adult mental health services (AMHS) impacts continuity of mental health treatment for young people. However, we do not know the extent of discontinuity of care in Europe nor the effects of discontinuity on the mental health of young people. Current research is limited, as the majority of existing studies are retrospective, based on small samples or used non-standardised information from medical records. The MILESTONE prospective cohort study aims to examine associations between service use, mental health and other outcomes over 24 months, using information from self, parent and clinician reports. PARTICIPANTS: Seven hundred sixty-three young people from 39 CAMHS in 8 European countries, their parents and CAMHS clinicians who completed interviews and online questionnaires and were followed up for 2 years after reaching the upper age limit of the CAMHS they receive treatment at. FINDINGS TO DATE: This cohort profile describes the baseline characteristics of the MILESTONE cohort. The mental health of young people reaching the upper age limit of their CAMHS varied greatly in type and severity: 32.8% of young people reported clinical levels of self-reported problems and 18.6% were rated to be 'markedly ill', 'severely ill' or 'among the most extremely ill' by their clinician. Fifty-seven per cent of young people reported psychotropic medication use in the previous half year. FUTURE PLANS: Analysis of longitudinal data from the MILESTONE cohort will be used to assess relationships between the demographic and clinical characteristics of young people reaching the upper age limit of their CAMHS and the type of care the young person uses over the next 2 years, such as whether the young person transitions to AMHS. At 2 years follow-up, the mental health outcomes of young people following different care pathways will be compared. TRIAL REGISTRATION NUMBER: NCT03013595.

How do people with eating disorders experience the stigma associated with their condition? A mixed-methods systematic review.

BACKGROUND: Public opinion research shows that eating disorders (EDs) are a major target of stigmatisation. To understand the implications of this stigma, research investigating how stigma is experienced by individuals with EDs is critical. AIM: This paper aims to collate, evaluate and synthesise the extant empirical research illuminating how people with EDs experience the stigma associated with their condition. METHOD: A systematic mixed-methods literature search was performed. Articles that met a specified set of inclusion criteria underwent a quality assessment and thematic synthesis. RESULTS: Twenty-nine articles were included in the review. Studies were mostly qualitative and of reasonable methodological quality. The literature was characterised by five research themes, illuminating (i) the nature and prevalence of stigma experienced, (ii) stigma in families, (iii) stigma in healthcare contexts, (iv) self-stigmatisation and illness concealment, and (v) stigma resistance. CONCLUSIONS: The reviewed research showed that people with EDs have extensive experience of stigma in diverse settings. They report that stigma has negative implications for their psychological wellbeing and likelihood of help-seeking. However, research also shows that people with EDs actively seek to resist and challenge stigma. The review identifies the outstanding gaps and weaknesses in this literature.

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.

A systematic review of the literature on ethical aspects of transitional care between child- and adult-orientated health services.

BACKGROUND: Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services (CAMHS). Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative. METHODS: A wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced. RESULTS: Eighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence. CONCLUSIONS: There is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area.

Correction to: The interface between child/adolescent and adult mental health services: results from a European 28­country survey.

The original version of this article contained an error in Table 1. The correct table is presented below.

The interface between child/adolescent and adult mental health services: results from a European 28-country survey.

Transition-related discontinuity of care is a major socioeconomic and societal challenge for the EU. The current service configuration, with distinct Child and Adolescent Mental Health (CAMHS) and Adult Mental Health Services (AMHS), is considered a weak link where the care pathway needs to be most robust. Our aim was to delineate transitional policies and care across Europe and to highlight current gaps in care provision at the service interface. An online mapping survey was conducted across all 28 European Countries using a bespoke instrument: The Standardized Assessment Tool for Mental Health Transition (SATMEHT). The survey was directed at expert(s) in each of the 28 EU countries. The response rate was 100%. Country experts commonly (12/28) reported that between 25 and 49% of CAMHS service users will need transitioning to AMHS. Estimates of the percentage of AMHS users aged under 30 years who had has previous contact with CAMHS were most commonly in the region 20-30% (33% on average).Written policies for managing the interface were available in only four countries and half (14/28) indicated that no transition support services were available. This is the first survey of CAMHS transitional policies and care carried out at a European level. Policymaking on transitional care clearly needs special attention and further elaboration. The Milestone Study on transition should provide much needed data on transition processes and outcomes that could form the basis for improving policy and practice in transitional care.

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).

Architecture and functioning of child and adolescent mental health services: a 28-country survey in Europe.

The WHO Child and Adolescent Mental Health Atlas, published in 2005, reported that child and adolescent mental health services (CAMHS) in Europe differed substantially in their architecture and functioning. We assessed the characteristics of national CAMHS across the European Union (EU), including legal aspects of adolescent care. Using an online mapping survey aimed at expert(s) in each country, we obtained data for all 28 countries in the EU. The characteristics and activities of CAMHS (ie, availability of services, inpatient beds, and clinicians and organisations, and delivery of specific CAMHS services and treatments) varied considerably between countries, as did funding sources and user access. Neurodevelopmental disorders were the most frequent diagnostic group (up to 81%) for people seen at CAMHS (data available from only 13 [46%] countries). 20 (70%) countries reported having an official national child and adolescent mental health policy, covering young people until their official age of transition to adulthood. The heterogeneity in resource allocation did not seem to match epidemiological burden. Substantial improvements in the planning, monitoring, and delivery of mental health services for children and adolescents are needed.

'It's not a disease, it's a nuisance': controlling diabetes and achieving goals in the context of men with Type 1 diabetes.

Despite a steady growth in research into men's health, little is known about how men experience life with a chronic illness like Type 1 diabetes. To address this knowledge gap, we conducted an interview study with 15 men who have Type 1 diabetes. Following grounded theory analysis of the interview transcripts, we generated a number of inter-related themes which were then formulated as a theory of adjustment to life with Type 1 diabetes. This theory indicates that men reduce the seriousness of diabetes by defining it in ways other than a serious illness. By viewing diabetes in this way, men are then able to prioritise the pursuit of their personal goals over adherence to the diabetes regimen. Finally, men reassess their relationship with diabetes in light of diabetes-related complications. The goal of this process is to find the 'best fit' for diabetes in their lives - a place which will allow them to pursue and satisfy their personal goals. As men progress through life, personal goals may change and so too will their relationship with diabetes.

Living with type 1 diabetes: a by-person qualitative exploration.

Type 1 diabetes is a chronic condition which places enormous demands on the individual diabetic. A strict care routine is necessitated, yet even the most controlled and disciplined diabetic is likely to experience associated health problems and automatically faces a reduced life expectancy. The current study explores the psychological repercussions of this situation via a small scale qualitative study which focuses on the very different viewpoints and experiences of four adults living with Type 1 diabetes. A new and original form of by-person (or by-case) qualitative analysis is employed in order to capture, in a rich and holistic fashion, each participant's current relationship with their condition, their experience of living and dealing with diabetes and the ways in which diabetes is integrated within their lives and identities. The findings have implications for, and are discussed in relation to, issues of control, regimen adherence, and what it means to be a 'good' or 'successful' diabetic. The conclusion is drawn that the satisfaction of personal goals and a focus on psychological as well as physical health may be very important if positive quality of life outcomes are to be attained in the context of Type 1 diabetes.