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Protocol for the development and validation procedure of the managing the link and strengthening transition from child to adult mental health care (MILESTONE) suite of measures.

ABSTRACT: BACKGROUND:Mental health disorders in the child and adolescent population are a pressing public health concern. Despite the high prevalence of psychopathology in this vulnerable population, the transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) has many obstacles such as deficiencies in planning, organisational readiness and policy gaps. All these factors contribute to an inadequate and suboptimal transition process. A suite of measures is required that would allow young people to be assessed in a structured and standardised way to determine the on-going need for care and to improve communication across clinicians at CAMHS and AMHS. This will have the potential to reduce the overall health economic burden and could also improve the quality of life for patients travelling across the transition boundary. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Health Care) project aims to address the significant socioeconomic and societal challenge related to the transition process. This protocol paper describes the development of two MILESTONE transition-related measures: The Transition Readiness and Appropriateness Measure (TRAM), designed to be a decision-making aide for clinicians, and the Transition Related Outcome Measure (TROM), for examining the outcome of transition. METHODS:The TRAM and TROM have been developed and were validated following the US FDA Guidance for Patient-reported Outcome Measures which follows an incremental stepwise framework. The study gathers information from service users, parents, families and mental health care professionals who have experience working with young people undergoing the transition process from eight European countries. DISCUSSION:There is an urgent need for comprehensive measures that can assess transition across the CAMHS/AMHS boundary. This study protocol describes the process of development of two new transition measures: the TRAM and TROM. The TRAM has the potential to nurture better transitions as the findings can be summarised and provided to clinicians as a clinician-decision making support tool for identifying cases who need to transition and the TROM can be used to examine the outcomes of the transition process. TRIAL REGISTRATION:MILESTONE study registration: ISRCTN83240263 Registered 23-July-2015 - ClinicalTrials.gov NCT03013595 Registered 6 January 2017.

SUBMITTER: Santosh P

PROVIDER: S-EPMC7161143 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Protocol for the development and validation procedure of the managing the link and strengthening transition from child to adult mental health care (MILESTONE) suite of measures.

Santosh P P Adams L L Fiori F F Davidović N N de Girolamo G G Dieleman G C GC Franić T T Heaney N N Lievesley K K Madan J J Maras A A Mastroianni M M McNicholas F F Paul M M Purper-Ouakil D D Sagar-Ouriaghli I I Schulze U U Signorini G G Street C C Tah P P Tremmery S S Tuomainen H H Verhulst F C FC Warwick J J Wolke D D Singh J J Singh S P SP

BMC pediatrics 20200416 1

<h4>Background</h4>Mental health disorders in the child and adolescent population are a pressing public health concern. Despite the high prevalence of psychopathology in this vulnerable population, the transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) has many obstacles such as deficiencies in planning, organisational readiness and policy gaps. All these factors contribute to an inadequate and suboptimal transition process. A suite of meas ...[more]

PMID: 32299401

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Project description:BACKGROUND:Transition from distinct Child and Adolescent Mental Health (CAMHS) to Adult Mental Health Services (AMHS) is beset with multitude of problems affecting continuity of care for young people with mental health needs. Transition-related discontinuity of care is a major health, socioeconomic and societal challenge globally. The overall aim of the Managing the Link and Strengthening Transition from Child to Adult Mental Health Care in Europe (MILESTONE) project (2014-19) is to improve transition from CAMHS to AMHS in diverse healthcare settings across Europe. MILESTONE focuses on current service provision in Europe, new transition-related measures, long term outcomes of young people leaving CAMHS, improving transitional care through 'managed transition', ethics of transitioning and the training of health care professionals. METHODS:Data will be collected via systematic literature reviews, pan-European surveys, and focus groups with service providers, users and carers, and members of youth advocacy and mental health advocacy groups. A prospective cohort study will be conducted with a nested cluster randomised controlled trial in eight European Union (EU) countries (Belgium, Croatia, France, Germany, Ireland, Italy, Netherlands, UK) involving over 1000 CAMHS users, their carers, and clinicians. DISCUSSION:Improving transitional care can facilitate not only recovery but also mental health promotion and mental illness prevention for young people. MILESTONE will provide evidence of the organisational structures and processes influencing transition at the service interface across differing healthcare models in Europe and longitudinal outcomes for young people leaving CAMHS, solutions for improving transitional care in a cost-effective manner, training modules for clinicians, and commissioning and policy guidelines for service providers and policy makers. TRIAL REGISTRATION:"MILESTONE study" registration: ISRCTN ISRCTN83240263 Registered 23 July 2015; ClinicalTrials.gov NCT03013595 Registered 6 January 2017.

Project description:ObjectiveYoung people moving from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) are faced with significant challenges. To improve this state of affairs, there needs to be a recognition of the problem and initiatives and an urgent requirement for appropriate tools for measuring readiness and outcomes at the transfer boundary (16-18 years of age in Europe). The objective of this study was to develop and validate the Transition Readiness and Appropriateness Measure (TRAM) for assessing a young person's readiness for transition, and their outcomes at the transfer boundary.DesignMILESTONE prospective study.SettingEight European Union (EU) countries participating in the EU-funded MILESTONE study.ParticipantsThe first phase (MILESTONE validation study) involved 100 adolescents (pre-transition), young adults (post-transition), parents/carers and both CAMHS and AMHS clinicians. The second phase (MILESTONE cohort study and nested cluster randomised trial) involved over 1000 young people.ResultsThe development of the TRAM began with a literature review on transitioning and a review of important items regarding transition by a panel of 34 mental health experts. A list of 64 items of potential importance were identified, which together comprised the TRAM. The psychometric properties of the different versions of the TRAM were evaluated and showed that the TRAM had good reliability for all versions and low-to-moderate correlations when compared with other established instruments and a well-defined factor structure. The main results of the cohort study with the nested cluster randomised trial are not reported.ConclusionThe TRAM is a reliable instrument for assessing transition readiness and appropriateness. It highlighted the barriers to a successful transition and informed clinicians, identifying areas which clinicians on both sides of the transfer boundary can work on to ease the transition for the young person.Trial registration numberISRCTN83240263 (Registered 23 July 2015), NCT03013595 (Registered 6 January 2017); Pre-results.

Project description: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).

Project description:BACKGROUND:Adolescence and young adulthood is a vulnerable time during which young people experience many development milestones, as well as an increased incidence of mental illness. During this time, youth also transition between Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS). This transition puts many youth at risk of disengagement from service use; however, our understanding of this transition from the perspective of youth is limited. This systematic review aims to provide a more comprehensive understanding of youth experiences of transition from CAMHS to AMHS, through a qualitative thematic synthesis of the extant literature in this area. METHOD:Published and unpublished literature was searched using keywords targeting three subject areas: Transition, Age and Mental Health. Studies were included if they qualitatively explored the perceptions and experiences of youth who received mental health services in both CAMHS and AMHS. There were no limitations on diagnosis or age of youth. Studies examining youth with chronic physical health conditions were excluded. RESULTS:Eighteen studies, representing 14 datasets and the experiences of 253 unique service-users were included. Youth experiences of moving from CAMHS and AMHS are influenced by concurrent life transitions and their individual preferences regarding autonomy and independence. Youth identified preparation, flexible transition timing, individualized transition plans, and informational continuity as positive factors during transition. Youth also valued joint working and relational continuity between CAMHS and AMHS. CONCLUSIONS:Youth experience a dramatic culture shift between CAMHS and AMHS, which can be mitigated by individualized and flexible approaches to transition. Youth have valuable perspectives to guide the intelligent design of mental health services and their perspectives should be used to inform tools to evaluate and incorporate youth perspectives into transitional service improvement. TRIAL REGISTRATION:Clinical Trial or Systematic Review Registry: PROSPERO International Prospective Register of Systematic Reviews CRD42014013799 .

Project description:Despite the pivotal role of developmental surveillance in pediatric practice for the early detection of neurodevelopmental disorders (NDDs), there are several barriers, including scarcity of time and staff availability, to its implementation. Additionally, inadequate parental knowledge on what to expect about their child's development contributes to potential delays in the early identification of NDDs. Home-based records (HBRs) are widely used in both high-income and low- and middle-income countries, allowing caregivers to prospectively chart the child's development, including milestone attainment, and thus can be a useful tool for developmental surveillance. Therefore, we analyzed data on milestone attainment from birth to 5 years of age obtained through the home-based records (the Maternal Child Health Handbook: MCHH) in 720 children who attended the Hirosaki Five-year-old children Developmental Health Check-up Study in Hirosaki, Japan to identify trajectory patterns of milestone attainment. Parallel process latent class growth analysis on four milestone domains (motor, social interaction, communication, and self-care) revealed three different trajectories (Class 1: "Consistent milestone attainment" group; 42%, Class 2: "subtle initial delay and catch-up" group; 45%, Class 3: "Consistent failure to attain expected milestones" group; 13%). In Class 3, 90% of children were diagnosed with at least one NDDs at age 5 and approximately 65% of children had autism spectrum disorder and/or intellectual disability, the rate of which was higher than that in the other two classes. Boys and preterm-born children were more likely to be assigned to classes with less favorable trajectories of milestone attainment. Although the use of the MCHH alone does not substitute diagnostic evaluation for NDDs, our study findings suggest the potential utility of the MCHH as a tool to educate parents on what longitudinal patterns of milestone attainment are concerning and require prompt visits to professionals.

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Protocol for the development and validation procedure of the managing the link and strengthening transition from child to adult mental health care (MILESTONE) suite of measures.

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Protocol for the development and validation procedure of the managing the link and strengthening transition from child to adult mental health care (MILESTONE) suite of measures.

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