All young people– defined by the World Health Organization as any person between the ages of 10 and
24 years1– experience transformations in their lives and their understanding of the world as they grow
older. Although it may not be possible for all, young people need to achieve four crucial developmental tasks: (1) consolidate their identity, (2) achieve independence from their parents, (3) establish adult
relationships outside their families, and (4) find a vocation.2A fundamental principle is that when young
people have a need for health care, this care must be provided in a manner that is appropriate to their stage of development. The term used to describe this principle is developmentally appropriate health care (DAH). DAH should underpin all health care for young people and in particular for those with a long-term condition. However, the term has been ill-defined and used inconsistently; in turn, this has made it difficult
to assess whether or not it has been implemented in reported studies.3,4
Furthermore, a young person with a long-term condition has to move from children’s to adults’ services.
This process is called‘transition’ and is defined as the purposeful, planned process that addresses the
medical, psychosocial, educational and vocational needs of adolescents and young adults with chronic physical, neurodevelopmental and medical conditions as they move from child-centred to adult-oriented
health care systems.5‘Transfer’ is the formal ‘event’ when the medical care of a young person is moved
from children’s to adults’ services.
The UK and Australia are the only two high-income countries with national guidance on transition, although
academies and specialty groups also make recommendations.7–9The need for improved transitional health
care is set out in recent policy and recommendations, such as advice from the Department of Health and
Social Care in 200610and 2008,11recommendation 23 from the 2010 Kennedy Report,12the 2015 Care
Quality Commission report From the Pond to the Sea13and National Institute for Health and Care Excellence
(NICE) guidance on transition in 2016.14Commissioners, provider organisations and clinicians have a role to
play in such improvements.
The number of young people surviving to adulthood is increasing; many children with long-term conditions that once commonly caused death in childhood now live into adulthood. In a typical NHS Trust serving a population of 270,000, about 100 young people with chronic illness, a complex physical impairment or a
neurodevelopmental disorder reach the age of 16 years each year.15As transition takes place over about
7 years, the number in transition at any time in a typical trust is approximately 700.
New understanding of adolescent and young adult brain development and its associations with behaviour16
further reinforce the need for transitional health care to be set in a developmental context. Transition is important because:
l Many young people with a range of long-term conditions have poor social outcomes, following
transition, in areas of social participation, employment or further education. For example, young adults
with long-term conditions, such as cancer, congenital bowel anomalies and renal disease,17congenital
heart disease18and chronic physical disability,19and those with chronic illness,20,21have demonstrated
delays in autonomy, psychosexual and social development. Furthermore, few young adults with neurodevelopmental disorders, such as autism spectrum disorder (ASD), attain their potential for participation in society.22
l Chronic illnesses, such as diabetes mellitus and renal disease,23are prone to deteriorate during the
adolescent years; they need frequent medical monitoring and treatment optimisation. Young people
reported finding it difficult to negotiate transition in services for haematology,24type 1 diabetes
mellitus,25epilepsy,26,27physical disability28,29and rheumatology.30Conditions such as cerebral palsy give
rise to symptoms that interfere with daily living, such as pain, spasticity and seizures. Most mental health disorders of adults develop during adolescence just at the time when the commissioning and provision of services is most likely to move from child- and family-focused to adult symptom-orientated
mental health services. There are concerning rejection rates after solid organ transplants.31
l Some adults’ services are not routinely provided (e.g. for adults with attention deficit hyperactivity
disorder32or ASD). Other adults’ services, such as physiotherapy and mental health services,33have
different, and usually narrower, entry criteria. Some services that require multidisciplinary co-ordination
(e.g. for those with cerebral palsy) are provided in childhood but are rarely provided in adulthood.34
Central government guidance and direction has sought to improve services for transitional health care but
there remains a need to improve services.13,14In 2017, a national CQUIN (Commissioning for Quality and
Innovation National Goals)35was introduced around transitions from children to young people’s mental
health services.
Developments in health-care transition during the period of the research programme
Since the start of the programme in 2012, there have been developments in the field of transition of which we have taken account.
Results of published evaluative studies remain difficult to generalise from because they are usually about an intervention in one clinical setting, for one condition and using a locally designed intervention. The
Cochrane review36of interventions to improve transition, published in 2016, confirmed the lack of good
evidence. Studies with more rigorous protocols have since been conducted.37–40A systematic review41in
2017 reported the limitations of methods used in comparative studies of transition interventions. It found, for example, that most were small, single-condition studies, used unvalidated questionnaires, and did not report the age of transfer or the age at and time of questionnaire completion. In designing our research, we had anticipated such methodological limitations and addressed them in the methods we used for the longitudinal study [work packages (WPs) 2.1, 2.2 and 2.3].
Two Delphi studies proposed a suite of outcomes42and process measures43for evaluating transition.
Our choice of outcomes in the longitudinal study is in line with these international studies.
A synthesis of qualitative studies of young people’s views about transition44confirmed that there is much
literature about the issues and difficulties encountered, and supported our decision not to undertake further exploratory work with young people.
As anticipated, arrangements for commissioning NHS services have continued to change during the
research programme. However, the commissioning focus of our research concerns‘what’ and ‘how’ to
commission. We intended that our findings would be relevant to any commissioning structure, including whether or not commissioning and service provision are brought together in the same organisation.
Aims and objectives of the research programme
The overall aim of the programme was to promote the subjective well-being and health of young people with long-term conditions by generating evidence to enable NHS commissioners and trusts to facilitate the
successful transition of young people from children’s to adults’ health care, thereby improving health and
social outcomes.
SYNOPSIS
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To address this aim, the programme had three objectives:
1. to work with young people with long-term conditions to determine what successful transition means to them and what is important in their transitional health care
2. to identify the features of transitional health care that are effective and efficient
3. to determine how transitional health care should be organised, provided and commissioned.
Three separate WPs addressed each of these objectives. We present a summary of each WP and then bring together the results of all nine strands to inform our conclusions and their implications. As an overview, and to aid orientation, the WPs are summarised in Box 1, followed by Figure 1, which shows how the WPs influenced each other.
At the end of the account of each WP, we indicate its links to the other WPs and how each WP contributed to the seven main implications of our work.
In Appendix 1 is a summary of work we completed before applying for a Programme Grant.
In Appendix 2 are the management arrangements for the programme and a diagram showing how key groups interacted.
BOX 1 Overview of the WPs
Objective 1
Work package 1.1
l To form and maintain a young people’s advisory group for the programme.
l To consult with the young people’s advisory group on all aspects of the programme.
Work package 1.2
l To explore the usefulness of a‘health passport’ through research co-led by the young people’s advisory group.
Work package 1.3
l To explore the importance that young people attach to different components of successful transition.
Objective 2
Work package 2.1
l To examine whether or not the proposed beneficial features of services predict outcomes for young people with type 1 diabetes mellitus, cerebral palsy or ASD and an associated mental health problem.
l To determine the resource use and costs of care.
Work package 2.2
l To investigate the factors that promote or inhibit the introduction of the proposed beneficial features of services.
Work package 2.3
Objective 3
Work package 3.1
l To identify, describe and understand the factors that enable or inhibit the introduction of organisation-wide DAH for young people.
Work package 3.2
l To identify the structures, processes and relationships between commissioning entities in the NHS and other agencies relevant to transitional health care.
l To identify the facilitators of and barriers to commissioning for transitional health care.
l To identify how transitional health care could be better commissioned.
Work package 3.3
l To synthesise learning from the research programme on‘what’ and ‘how’ to commission.
l To learn about the most useful way to provide research-based evidence to inform commissioners.
WP 3.1: DAH WP 1.2: health passport
WP 1.3: Q-sort
WP 2.1: longitudinal – quantitative
WP 2.2: longitudinal – qualitative
WP 2.3: DCE and economic modeling WP 1.1: young person’s working group (UP) WP 3.2: commissioning – data-gathering WP 3.3: commissioning – synthesis
FIGURE 1 How the WPs influenced each other. DCE, discrete choice experiment; UP, United Progression.
BOX 1 Overview of the WPs (continued)
SYNOPSIS
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