The Programme started in May 2012 and for some months before that there had been much activity obtaining contracts with collaborating Trusts, Ethics permissions, and Research & Development permissions.
Even before that there had been preparatory work, also funded by the National Institute for Health Research that had:
Examined models of transition services across the UK and further a field. A scoping review of the literature is completed and submitted for publication
Sought better estimates of numbers of young people with complex health needs
Piloted intended baseline and outcome measures
The external advisory board has met once.
In October there was the official launch held at the Great North Museum
The programme is organised under its three research objectives – and under each objective there are three work packages.
Objective 1. To work with young people with complex health needs to determine what successful transition means to them and what is important in their transitional care
WP 1.1 Formation, maintenance and consultation with a Programme Young Person Working Group that now calls itself the UP group
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Gail Dovey Pearce and Tracy Scott, from Northumbria Healthcare NHS Trust, have facilitated the formation of a young people’s group. It meets about once a month and calls itself the UP group. It has already:
WP 1.2 Evaluation of a “health passport” in a study co-led by the UP group
WP 1.3 A study to explore the importance young people attach to the different components of ‘successful transition’ and proposed beneficial features of services for transitional care – Q sort
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This is just getting going. The ‘Q’ sort study asks a range of young people with complex health needs in Transition about aspects of their care and what they think successful transition means. Each person is then asked to to sort these issues by importance. Then a computer programme gathers together everyone’s preferences to identify key concepts and topics.
From February, about 50 young people will meet individually with the researcher, Jenny Hislop.
Objective 2. To identify the features of transitional care that are effective and efficient
A four year longitudinal study
WP 2.1 Quantitative data collection on 450 young people, including costs and resources used
This is the largest work package. It will follow up 450 young people with long term conditions over three years. The young people are recruited just before their health care transfers to adult services.
Although the Programme concerns young people with all long term conditions, this work package only follows young people with Diabetes (an example of a chronic illness), Cerebral Palsy (an example of a condition with many different physical and sensory difficulties) or Autism and Psychological problems (an example of a condition with psychological difficulties).
We are recruiting over one year, having started in July 2012. As of February 2013, we have recruited 140 young people.
Each young person is visited at home by the research associate and asked to complete questionnaires. This will then be repeated annually for three years. The questionnaires are about:
The researchers will then analyses the data to see if there are certain elements of the services received that are associated with better outcomes. If there are, this would be a strong clue that those services caused the better outcome; it does not prove it but it would be much better evidence than any that has been provided before.
WP 2.2 YETI – Young people’s Experiences of TransItion.
Qualitative data collection on 15 young people, including observations of consultations
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This project will recruit 15 young people from WP 2.1 the quantitative study
* Each young person will be interviewed at two time points, approximately 12-18 months apart.
* They will be asked to identify a non-health professional significant to their healthcare experiences and a health professional significant to their healthcare experiences. Each of these people will also be interviewed.
* The young person will be asked to keep a diary in the way that is best for them (video, audio, written, photo etc)
* The researcher will observe some of their clinical consultations.
By focusing on the triad of actors (young person-lay person-health professional) and observing real-time clinical encounters we will triangulate the different practical experiences and understandings of, views about and aspirations for the provision of transition services.
WP 2.3 Health economic assessment of the relative efficiency of illustrative models of transition
Objective 3 To determine how transitional care should be organised, provided and commissioned
WP 3.1 A process evaluation of how “developmentally appropriate health care” in introduced in two NHS Trusts
WP 3.2 A study of commissioning: the current arrangements, barriers and facilitators, how could transition services be commissioned better?
WP 3.3 A synthesis of learning from the research Programme on WHAT and HOW to commission and testing out of commissioning guidance through local and national workshops