Title: How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?
Funder: Department of Health (England)

Abstract: AIMS & OBJECTIVES The 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 care 2 Identify the features of transitional care that are effective and efficient 3 Determine how transitional care should be organised, provided and commissioned BACKGROUND Definitions. 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 PLANS Objective 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 TEAM Colver 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. MANAGEMENT A Programme Management Board, consisting of all co-applicants, will meet every 3 months. An External Advisory Board will review progress every 18 months. RESEARCH ENVIRONMENT We 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/IMPACT The 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 INVOLVEMENT A group of YP with CHN in the lead Trust was consulted about the work, made a video about consulting behaviour and advised on formation of a sustainable YP group for the Programme. Ten voluntary organisations were surveyed about the work During the programme the YP Work Group will co-lead a research stream. Helen Wheatley, Council for Disabled Children, will contribute to YP involvement, commissioning and dissemination. ETHICS As well as informed consent, confidentiality and safety of researchers, we address concerns that could arise for participants at home visits concerning anxiety, identification of unmet health needs and child protection. JUSTIFICATION FOR RESOURCES A Programmatic approach over five years is needed to address this complex topic. Although more expensive than postal questionnaires, home visits will be undertaken in order to optimise recruitment and retention. 8% of the budget is for YP and voluntary sector engagement.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE