CompletedPublic Health & HealthcareEducation & Skills
How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?
Recipient organisationNorthumbria Healthcare NHS Foundation TrustSource-published name: Northumbria Healthcare NHS Foundation Trust
Funding£2.0M
PeriodMay 2012 — Sept 2017
In plain English
AI plain-English summary
Every year, roughly 25,000 young people with complex health needs in the UK turn 16 and must leave child healthcare for adult services—a transition that often leaves them with worse health and poorer social outcomes. This matters because, despite two decades of official guidance and repeated government reports stressing its importance, the transition process remains poorly understood and inconsistently delivered. No one has systematically asked young people what a successful transition actually means to them, nor identified which specific features of transitional care reliably improve their quality of life, disease control, or satisfaction. If this research succeeds, NHS commissioners and Trusts will receive a new commissioning brief, up to ten evidence-based features of effective transitional care, and practical tools to monitor progress. The immediate impact would be a shift from ad hoc, often negative experiences to a planned, developmentally appropriate process that improves health and social outcomes for young people with conditions such as diabetes, cerebral palsy, and autism. The work is applied and directly aimed at changing how the NHS organises and pays for care—not fundamental science, but a systematic effort to close a persistent gap between guidance and practice.
View original technical description
AIMS & OBJECTIVESThe overall aim of the Programme is to promote the quality of life and health of young people (YP) with complex health needs (CHN) by generating evidence to enable NHS Commissioners and Trusts to facilitate successful transition of YP from child to adult health care, thereby improving health and social outcomes.Our three objectives are to:1 Work with YP with CHN to determine what successful transition means to them and what is important in their transitional care2 Identify the features of transitional care that are effective and efficient3 Determine how transitional care should be organised, provided and commissionedBACKGROUNDDefinitions. YP with CHN have a physical or mental health condition that has a substantial, long-term adverse effect on their ability to carry out normal day-to-day activities. Transition is the planned process that addresses the medical, psychosocial and educational needs of young people with CHN as they move from child to adult centred health care.An estimated 25,000 YP with CHN and average learning ability turn 16 years each year in the UK.Research is needed because many YP with CHN have negative experiences of health care during transition as well as poor health and social outcomes following transition. Despite 20 years of guidance, the 2010 Kennedy Report and 2011 Green Paper on special needs both stress the importance of transition and the lack of progress to better health and social outcomes.RESEARCH PLANSObjective 1: As the Programme proceeds, a group of YP with CHN will feed their views into it, meet with YP groups from the voluntary sector and co-lead a project on ‘health passports’. A Q sort study with YP with CHN will explore understanding of ‘successful’ transition; then, using a Discrete Choice Experiment we will assess the relative value YP attach to components of transition.Objective 2: In a longitudinal study of 450 YP with diabetes, cerebral palsy and autism from nine NHS Trusts, outcomes of quality of life, satisfaction with services and disease status will be related to features of transitional care which are postulated to improve those outcomes.Objective 3: Process evaluations in two Trusts will explore the facilitators of and barriers to introduction of developmentally appropriate health care. At year 2, we will describe how transitional care is currently commissioned; then use qualitative research methods to investigate the path to improved commissioning. We will then work with commissioners and other stakeholders to synthesise the results of the Programme in order to develop a new commissioning brief for transitional care that will result in improved care and outcomes.RESEARCH TEAMColver has led a complex nine centre European Project over 10 years. Reape has managerial responsibility for transition in the lead Trust. Wheatley, Council for Disabled Children, brings expertise in YP involvement, commissioning and national context. McDonagh is a world authority on transitional care. Academics at Newcastle University with expertise in health economics, medical sociology, child psychology and psychiatry, statistics and neuroscience complete the team. Most collaborators are clinical academics in the NHS Trusts that will recruit YP.MANAGEMENTA Programme Management Board, consisting of all co-applicants, will meet every 3 months. An External Advisory Board will review progress every 18 months.RESEARCH ENVIRONMENTWe will work with the relevant NIHR Topic and Comprehensive Local Research Networks.The research is embedded in the Newcastle University Institute of Health and Society, which has a strong track record of applied health research.OUTPUTS/IMPACTThe NHS will be presented with tools to assist implementation, indicators to monitor progress and up to ten features of transitional care for which there is evidence for improved outcomes. Successful transition will improve the lives of YP with CHN by improving their quality of life, health and social outcomes.PATIENT/PUBLIC IN
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