The National Transition Evaluation Study
NTES
Evaluation of the Development of the Burdett National Transition Nursing Network
2 other identifiers
observational
100
1 country
7
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for all trials
Started Apr 2023
7 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
April 21, 2023
CompletedFirst Submitted
Initial submission to the registry
April 28, 2023
CompletedFirst Posted
Study publicly available on registry
May 22, 2023
CompletedPrimary Completion
Last participant's last visit for primary outcome
May 31, 2024
CompletedStudy Completion
Last participant's last visit for all outcomes
May 31, 2024
CompletedMay 22, 2023
May 1, 2023
1.1 years
April 28, 2023
May 10, 2023
Conditions
Keywords
Outcome Measures
Primary Outcomes (7)
To evaluate processes and outcomes, and to evaluate the reach of the Model of Improvement for Transition for young people transitioning from child into adult services, increases over time will be demonstrated in:
The number of Transition Lead roles for a whole organisation
2.5 years
The investigators expect to see an increase in:
The number of organisations working through Transition QI process
2.5 years
The investigators expect to see an increase in:
The number of organisations with transition contact
2.5 years
The investigators expect to see an increase in:
The number of organisations with an Executive Lead for transition
2.5 years
The investigators expect to see an increase in:
The number of Quality Improvement (QI) transition pathways completed
2.5 years
The investigators also expect to see an increase in:
The number of health-based youth workers that are in post to support transition
2.5 years
Lastly, The investigators also expect to see an increase in:
The number of organisations with processes in place to use feedback from young people to support service improvement
2.5 years
Study Arms (4)
Lead nurse for Transition/Regional Nurse Advisors
The Lead Nurse and RNAs will be interviewed using telephone or online via Zoom. The interviews will be recorded using a Dictaphone rather than being saved via Zoom. Recordings will then be saved on the University's secure, password protected SharePoint for the study. Only the research team, and the designated transcriber, will have access to interview data. At the start of the project, interviews have been conducted in a PPI format to explore in depth the programme, expectations of how it should work and its implementation in order for the research team to devise the study. For the purposes of the research, interviews will be undertaken at one year, two years, and at the end of the programme to further explore implementation of the programme, including what works well, challenges encountered and their perceptions of the impact the programme has on families' experiences.
Young people
Young people aged 12 to 25 years will be invited to participate. Young people will be asked to complete surveys at baseline, six months to one year and 18 months. Survey: Online surveys (Qualtrics) will be used to collect data from young people participating in the case studies. Young people will be asked to provide basic demographic details: age, gender, health condition, and type of service they attend (children's/young person's/adults') and length of time since transfer to adult services (if already transitioned). Letter/email/video to a friend: Young people will also be asked to write a 'letter/email to a friend' to describe their experiences. This will be completed online with the survey. They will be invited to write a letter/email or record a video about a recent clinic appointment/encounter with a health professional.
Parents
Case study: Parents/carers will be invited to participate alongside young people. We will aim transition (including preparation, transfer and within adult services). Survey: Parents/carers of young people participating in the case study will be invited to complete an online survey (Qualtrics). Basic demographic details will be requested about the parent: age and gender; and their child: age, gender, health condition, and type of service they attend (children's/young person's/adults'), length of time since transfer to adult services (if already transitioned). Letter/email/video about their experiences: Parents will also be asked to complete a written task/video. They will be asked to describe their experiences relating to the shift in responsibility towards their child as the primary partner in their own healthcare, how their child is moving (or has moved) towards greater independence and competence in self-management.
Transition champions/key professionals
Transition champions and key professionals in participating Trusts who are involved in the care of young people included in the case studies will be identified by the RNAs. We will aim to involve staff from various professional roles. They will be invited to complete an online survey (using Qualtrics) during the first year and one at the end of the second year, towards the end of the project. The surveys will explore their views on the implementation of the programme, experiences of building/making changes to a transition service, including what works well, challenges encountered and their perceptions of the impact the programme has on families' experiences. One professional from each case study site will be interviewed via Zoom/telephone to explore these aspects more in-depth at the same time points as the surveys. Ideally, we will aim to interview the same professionals at both time points. Data access and storage for will be the same as for the Lead Nurse/RNA interviews.
Interventions
As previously specified
Eligibility Criteria
Young people and parents/carers from the eight case study sites for this project are eligible to participate. Dyads of young people and parents will be invited to participate. In cases where either the parent or young person does not wish to take part, the other can still participate. The Lead Nurse for Transition and RNAs are eligible to participate due to their direct role in implementing the National Transition Network and the Model of Improvement for Transition. Transition champions and key professionals from the eight case study sites for this project are eligible to participate.
You may qualify if:
- 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
You may not qualify if:
- Young people and parents/carers who the clinical team caring for them consider it not appropriate to invite them to participate.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of Surreylead
- The Leeds Teaching Hospitals NHS Trustcollaborator
- Burdett Trust for Nursingcollaborator
- Imperial College Healthcare NHS Trustcollaborator
- University Hospital Birmingham NHS Foundation Trustcollaborator
- Somerset NHS Foundation Trustcollaborator
- Alder Hey Children's NHS Foundation Trustcollaborator
Study Sites (7)
Derian House Children's Hospice
Chorley, Lancashire, United Kingdom
Darent Valley Hospitals; Dartford and Gravesham NHS Foundation Trust
Dartford, United Kingdom
Imperial College Healthcare NHS Trust
London, United Kingdom
Oxleas NHS Foundation Trust
London, United Kingdom
Nottinghamshire Healthcare NHS Foundation Trust
Nottingham, United Kingdom
Oxford University Hospitals NHS Trust
Oxford, United Kingdom
Sheffield Children's NHS Foundation Trust
Sheffield, United Kingdom
Related Publications (2)
Porter L, Gibson F, Aldiss S, Morgan S, Stanton A, Carney S, Farooq A, Barlow I, Sultan H, Sipanoun P. Bringing Young People, Health and Social Care Professionals, Transition Champions and Policymakers Together Through Hybrid Methods of Participation: Creating a Space for Shared Understanding of What Is Required to Improve Young People's Healthcare Transition. Health Expect. 2025 Feb;28(1):e70136. doi: 10.1111/hex.70136.
PMID: 39888226DERIVEDSipanoun P, Aldiss S, Porter L, Morgan S, Powell E, Gibson F. Transition of young people from children's into adults' services: what works for whom and in what circumstances - protocol for a realist synthesis. BMJ Open. 2024 Jan 4;14(1):e076649. doi: 10.1136/bmjopen-2023-076649.
PMID: 38176872DERIVED
MeSH Terms
Interventions
Intervention Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Faith Gibson, PhD
The University of Surrey/Great Ormond Street Hospital for Children NHS Foundation Trust
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- OTHER
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
April 28, 2023
First Posted
May 22, 2023
Study Start
April 21, 2023
Primary Completion
May 31, 2024
Study Completion
May 31, 2024
Last Updated
May 22, 2023
Record last verified: 2023-05