Work Packages

The Transition Programme is structured into 9 studies, or work packages, each of which sits under one of the Programme's three over-arching objectives.

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

Work package 1.1 - Formation of a young people's working group.

The Programme is advised and supported by a young people's working group called UP.  As part of its work the group has

  • Commented on information sheets and consent forms
  • Designed a certificate for research participants
  • Introduced the Launch with a PowerPoint presentation and talks
  • Assisted with the development of the Q-Sort Study

For more information on UP, take a look at the young people's page.  This includes a video outlining more of UP's work. 

Work package 1.2  - Evaluation of a “health passport” in a study co-led by the UP group

The UP Group has been leading a scoping study on the use of health passports - a document young people might carry with them when attending healthcare appointments. It contains information about them, their medical history and how they want people to communicate with and support them.

They are looking at the following question areas:

  • What are young people in the UK using?
  • Who benefits from the use of health passports?
  • Who wants them?
  • What supports YP in the use of health passports?
  • What is the potential role of technology (e.g. Apps; e-versions?)

For further information, please see UPs PowerPoint presentation on their work

Work package 1.3 - the Q-Sort Study

The 'Q' sort study asked a range of young people with complex health needs in Transition about aspects of their care and what they thought successful transition meant. Each person was then asked to sort these issues by importance. Then a statistical procedure gathered together everyone's preferences to identify key concepts and topics.  There will be a paper outlining results of this study available shortly.

Objective 2 - To identify the features of transitional care that are effective and efficient

Work package 2.1 - The longitudinal study

This is the largest work package, following 374 young people with long term conditions over three years. The young people were recruited before their health care transferred to adult services and are visited annually.  They are asked a series of questionnaires about their wellbeing and participation, their health care provision and experiences of accessing 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).

Recruitment to this study finished in 2013 and a mixture of third and fourth (final) visits are currently underway.

The study has produced a paper on the baseline data which is available to view in the resources section.

Work package 2.2 - Young people's Experiences of TransItion (YETI)

This qualitative project has recruited 15 young people from WP 2.1 the longitudinal study above.

Each young person is being interviewed at two time points, approximately 12-18 months apart.

They are 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 is asked to keep a diary in the way that is best for them (video, audio, written, photo etc.) and the researcher also observes some of their clinical consultations.

By focusing on the triad of actors (young person-lay person-health professional) and observing real-time clinical encounters the researchers will triangulate the different practical experiences and understandings of, views about and aspirations for the provision of transition services.

Interviews and observations are currently underway.

Work package 2.3 - Health economic assessment of the relative efficiency of illustrative models of transition

The Discrete Choice Experiment will help rank the relative importance of different components of transitional care to young people (see WP 1.3) Data for this work package is now being collected as part of the longitudinal and qualitative studies.

Objective 3 - To determine how transitional care should be organised, provided and commissioned

Work package 3.1 - A process evaluation of how “developmentally appropriate health care” is introduced in NHS Trusts

Our researchers interviewed and observed clinicians in order to understand in practical terms how 'developmentally appropriate healthcare' (DAH) is understood and introduced into NHS Trusts. Interviews and observations took place at the three trusts (Northumbria Healthcare, Birmingham Children’s Hospital and University Hospitals Birmingham NHS Trusts) and was followed by a period of data analysis. To read the scoping study, please see our Resources section.  Further papers will follow shortly.

Work package 3.2 - A study of commissioning: the current arrangements, barriers and facilitators, how could transition services be commissioned better?

The aim of this study is to understand how commissioning processes work on the ground, and to identify the barriers to successful commissioning. In order to acheive this, the Research Associate has conducted interviews with professionals from clinical commissioning groups, healthcare trusts, the Department of Health, NHS England and special interest groups.

Work package 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.

This study is informed by the work currently being undertaken in work package 3.2.