the national transition evaluation study

Conditions: Young People With All Long-term Health Conditions

Summary: this is a multi-centre study within england to evaluate whether the burdett trust national transition network and the implementation of the model of improvement for transition has an impact on the experience of transitioning from child to adult services for young people, and their families. a concurrent mixed methods design will be utilised with qualitative (interviews/case studies), and quantitative descriptive (surveys) data collected simultaneously over three phases. participants will include young people, parents, and professionals involved in the young person's transition journey.

this study forms the evaluation aspect to a large transition-related innovation that is taking place across england (https://www.leedsth.nhs.uk/burdett-national-transition-nursing-network/). it is important to formally evaluate this process. the study has been designed to determine whether the burdett national transition network and implementation of the model of improvement for transition has an impact on the experience of transitioning from child to adult services for young people, and their families. the research team at the university of surrey will conduct a three-phased, mixed methods study to understand the experiences of all relevant stakeholders involved in the network and the model's implementation and transition service users. the overall aim is to document new learning to ensure maximum reach of the model within a network of transition care, and improve the outcomes for young people transitioning to adult services. study design our intention is to undertake a process evaluation using a case study approach. the investigators want to look at the change from before, during and after the model of improvement for transition's implementation. the investigators plan to gather data at the start of the project about what happens now, and then what happens as the model of improvement for transition evolves. the investigators will also gather information that is already routinely collected on an ongoing basis in each of the sites working with the rnas, as part of the overall implementation project. this will be provided in summary form. as this is an evolving process, this may include but may not be limited to the: 1. number of transition lead roles for a whole organisation; 2. number of organisations working through transition qi process; 3. number of organisations with transition contact; 4. number of organisations with an executive lead for transition; 5. number of quality improvement (qi) transition pathways completed; 6. number of health-based youth workers that are in post to support transition; 7. number of organisations with processes in place to use feedback from young people to support service improvement; 8. number of organisations with effective transition governance processes in place e.g. transition board, steering group, organisational policy and reporting. two organisations or services per region (eight study sites in total) that is involved in the transition of young people to adult health services will be selected as case studies, giving eight case studies in total. to inform an unbiased selection of cases, a list of criteria will be described a priori by the project team, a consensus will be reached on the type, and context of the services to be included based on maximum variation, for example, geography and deprivation score, size of institution or service, ethnic diversity of the population, type of long-term health condition. the investigators aim to include populations that are under-researched such as: young people with complex needs, mental health problems, looked after children, young people receiving palliative care, and those for whom english is not their first language. theoretical framework the 'on your own feet ahead' framework provides a focus for our study. the framework addresses eight key elements of good transitional care, divided into three core categories: 1. interventions to improve the organisation of care; 2. interventions to stimulate independence and self-management of young people, and 3. collaboration with young people (and their families) and within the multidisciplinary team of professionals, working both in child and adult health care. methods it is well recognised that the most challenging aspect of changing practice is implementation and 'normalisation' of the 'intervention': therefore both qualitative (interviews) and quantitative descriptive (surveys) will have an important role to play in gathering contextual information from staff regarding how the model of improvement for transition is both received and delivered. in order to understand the context and how the model of improvement for transition is received and delivered our evaluation over three phases with repeated measures will include: * the national lead nurse (interviews) * regional nurse advisors (interviews) * transition champions the regional nurse advisors work with in the trusts and key professionals in the various networks (case studies; survey/interviews) * young people and their parents/carers (case studies: survey/letter to a friend) data analysis survey data will be exported from qualtrics to spss for analysis. data stored within qualtrics will be deleted upon study completion. participants will be given a unique study id. only the study team will know the identity of the participants, necessary for the integration and synthesis of the survey and letter to a friend data or interview data. survey data quality will be assessed for item/scale missingness at each time point and handled in accordance with scale guidelines (where available). survey data will be analysed using descriptive statistics (e.g., means (standard deviations), medians (interquartile range) for continuous data, frequencies for categorical data) and presented by key group characteristics where appropriate (e.g., age group, gender etc) if appropriate, changes in the measurements over time will be tested with two-tailed, paired sample t-tests and wilcoxon matched pair signed rank tests (transition champion/key professionals), and repeated measures anova (young people and parents) . statistical significance will be considered at p ≤0.05 and as an exploratory study no adjustments will be made for multiple comparisons. interviews with the rnas and lead nurse will be transcribed for analysis by a transcription company approved by the university of surrey. the confidentiality agreement is provided with this application and can be found in clause 15 of the transcription purchase order terms and conditions document. any identifying information (e.g. names of people/hospitals) will be removed from the transcripts by the researcher following transcription. the interviews will be analysed using thematic analysis. the narratives in videos from the letter/email/video to a friend activity will be analysed using qualitative content analysis. the videos will not be transcribed. the research team will develop a proforma for the parents' videos and a separate one for young people's videos. proformas will be developed by the researchers watching two videos each and coming together to discuss the elements of the video. these proformas will be used for analysis of subsequent videos. study data will be stored within sharepoint on the university of surrey's password protected server. any files containing participant details will be password protected. data will only be accessible to the research team at the university of surrey.

Eligibility criteria:
inclusion criteria: * young people aged 12 to 25 years (upper age limit determined during the mapping and their parents/carers) * young people with any long-term health condition(s) that will require transfer to adult health care services and their parents/carers * young people who have already transferred to adult health care services within the last two years (at the point of recruitment) and their parents/carers * the lead nurse for transition and regional nurse advisors directly involved in implementation of national transition network and the model of improvement for transition * transition champions and key professionals involved in the young person's transition from child to adult services from the eight services/organisations which from the case study sites exclusion criteria: • young people and parents/carers who the clinical team caring for them consider it not appropriate to invite them to participate.

Keywords: young people parents transition into adult services long-term health conditions