NIHR | July 2019 | Insights into the transfer between children’s and adults’ services for young people with selected long-term conditions
A new Signal from NIHR provides an insight from young people with type 1 diabetes, autistic spectrum disorder (ASD) and cerebral palsy about their experiences of transferring between children’s and adults’ services.
Estimates suggest that around 15% of young people (aged between 11 and 15) have long-term conditions that require ongoing care. At age 16 when young people transfer from children’s services to adults’ services- a process known as transition- is a time of increased vulnerability due to potential loss of care continuity and the challenges of adolescence. This study explores the problem holistically to gain a fuller understanding of the issues involved to pinpoint the most effective interventions.
The study included 374 young people across 27 NHS Trusts, which included the formation of a young people’s advisory group,assessing what they saw as beneficial features of transition programmes, and interviews with staff such as commissioners of adult services.
Looking at the total score across the five quality of health domains, (range 5 to 15 with lower scores indicating better health), those with type 1 diabetes scored 5.2, whereas young people with autistic spectrum disorder or cerebral palsy scored 7. Scores tended to be worse for all participants after transfer.
The signal highlights that the quality of life scores fell in all conditions after transfer, suggesting that there are improvements to be made across the board. This study identifies three key features that services need to offer, namely meeting a member of the adult team, having parental involvement and encouraging health self-efficacy (Source: NIHR)
Full reference: Colver, A., et al. |2019 | Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme| Vol. 7|4| doi: 10.3310/signal-000793
Background As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700. Objectives Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition.
Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided. Design, settings and participants Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners. Main outcome measures Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes. Strengths This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved. Limitations There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited from 27 trusts widely spread over England and Northern Ireland, which varied greatly in the number and variety of the PBFs they offered. The quality of delivery of each PBF was not assessed. Owing to the nature of the data, only exploratory rather than strict economic modelling was undertaken. Results and conclusions (1) Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years. Our findings indicate an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services with whom responsibility for transitional health care currently lies. (2) DAH is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders. (3) Good practice led by enthusiasts rarely generalised to other specialties or to adults’ services. This indicates the importance of NHS Trusts adopting a trust-wide approach to implementation of transitional health care. (4) Adults’ and children’s services were often not joined up. This indicates the importance of adults’ clinicians, children’s clinicians and general practitioners planning transition procedures together. (5) Young people adopted one of four broad interaction styles during transition: ‘laid back’, ‘anxious’, ‘wanting autonomy’ or ‘socially oriented’. Identifying a young person’s style would help personalise communication with them. (6) Three PBFs of transitional health care were significantly associated with better outcomes: ‘parental involvement, suiting parent and young person’, ‘promotion of a young person’s confidence in managing their health’ and ‘meeting the adult team before transfer’. (7) Maximal service uptake would be achieved by services encouraging appropriate parental involvement with young people to make decisions about their care. A service involving ‘appropriate parental involvement’ and ‘promotion of confidence in managing one’s health’ may offer good value for money. Future work How might the programme’s findings be implemented by commissioners and health-care providers? What are the most effective ways for primary health care to assist transition and support young people after transfer? Funding The National Institute for Health Research Programme Grants for Applied Research programme.
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