Abstract
BackgroundMental 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.MethodsThe 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.DiscussionThere 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 registrationMILESTONE study registration: ISRCTN83240263 Registered 23-July-2015 - ClinicalTrials.gov NCT03013595 Registered 6 January 2017.
Highlights
Mental health disorders in the child and adolescent population are a pressing public health concern
There is an urgent need for comprehensive measures that can assess transition across the Child and Adolescent Mental Health Services (CAMHS)/ Adult Mental Health Services (AMHS) boundary
The Transition Readiness and Appropriateness Measure (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 Transition Related Outcome Measure (TROM) can be used to examine the outcomes of the transition process
Summary
The TRAM and TROM measures were developed (see Fig. 1) as per guidelines described in the United States (US) Food and Drug Administration (FDA) Guidance for Industry Patient-Reported Outcome Measures (US FDA, 2009) [40]. Participants were provided with the initial list of items generated from the literature (and revised in subsequent focus groups) to rank them on a scale of 1–10, with 1 being unimportant and 10 being very important when deciding on transition This same list of items was presented to the international expert panel of mental health clinicians with experience in service user transition from CAMHS. Phase 2 of validation Responsiveness and interpretability The responsiveness and interpretability of the TRAM and TROM were assessed using data obtained from the main MILESTONE study, with a total of approximately 1000 young people and associated parents/carers and CAMHS and AMHS clinicians recruited at baseline [39] after data collection for the main study had been completed. This transition predictor is formatted similar to a traffic light scoring system and allows the development of future analytics to look at data across all time points at the end of the study and whether the outcomes of transition can be predicted based on symptom profile
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