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NIHR Signal Insights into the transfer between children’s and adults’ services for young people with selected long-term conditions

Published on 16 July 2019

doi: 10.3310/signal-000793

How young people with type 1 diabetes, autistic spectrum disorder and cerebral palsy experience the transition to adult services depends on their condition and locality. Adult and children’s services need to work together to ensure they are offering young people the sources of support and resilience they need.

This NIHR-funded study found that children with type 1 diabetes were more likely to receive help shown to aid transition. For example, around two-thirds said they had met a member of the adult team, whereas less than a quarter of those with cerebral palsy or autistic spectrum disorder had done so.

However, 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. These, combined with better collaboration between services, can help ease the transition for young people.

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Why was this study needed?

It is estimated up to 15% of young people aged 11-15 years have long-term conditions that require ongoing specialist care, including diabetes. When these young people turn 16, many will need to transfer from children’s to adults’ services to continue their care. This process, known as transition, can take up to seven years to complete. It is a time of increased vulnerability due to potential loss of care continuity and the challenges of adolescence.

Although principles of good practice have been established, there is still variation in the support available to young people. Poor transitions can have lasting consequences, including failure to engage with adult services which may, in turn, impact upon future employment and education opportunities.

This study explored this problem holistically to gain a fuller understanding of the issues involved to pinpoint the most effective interventions.

What did this study do?

This NIHR study undertook three work packages which included the formation of a young people’s advisory group, a three-year study of 374 young people across 27 NHS Trusts assessing what they saw as beneficial features of transition programmes, and interviews with staff such as commissioners of adult services.

The beneficial features assessed included staff who promoted self-management of health, having a key worker, written transition plans, meeting the adult team before transfer and parental involvement (if wanted by the young person).

All study participants were aged between 14-18 years and had cerebral palsy, autistic spectrum disorder or type 1 diabetes. Young people with learning disabilities were excluded if they could not complete the questionnaire that assessed their views on the topic.

What did it find?

  • Differences in health-related quality of life were assessed using the EuroQol 5-Dimensions (Youth) (EQ-5D-Y) tool. Young people with type 1 diabetes scored considerably better than their peers with a median utility score of 0.94 (0 = worst possible health, 1 = best health) compared with 0.76 for young people with autistic spectrum disorder and 0.70 for those with cerebral palsy.
  • 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.
  • Young people were generally satisfied with services, although parents’ satisfaction was significantly lower. Over the three-year period covered by the longitudinal study, satisfaction with services remained stable for those with type 1 diabetes, but for those with cerebral palsy or autistic spectrum disorder, it progressively worsened.
  • The three main service features found to be associated with better outcomes were ‘appropriate parent involvement’, ‘promotion of health self-efficacy’ and ‘meeting the adult team before transfer’. However, not all children were offered these, and services often overstated their offering.
    For example, for services that said they facilitated appropriate parental involvement, 23% of children did not find this to be the case. Also, there was disparity between the three conditions, while two-thirds of children with diabetes met a member of the adult team before transfer, less than one-quarter of those with either autistic spectrum disorder or cerebral palsy did.
  • Even though transition can last until a young person is in their early twenties, commissioners and providers of adult services felt that it was the responsibility of children’s services.

What does current guidance say on this issue?

NICE guidance from 2016 states that managers in children’s and adults’ services need to work together to enable a smooth transition. Examples of good practice include having a joint mission statement and information sharing protocols.

Transition plans also need to reflect the individual’s capabilities, and preferences and young people should be asked regularly about parental or carer involvement.

Before transfer, they should be able to meet someone from adult services and choose a named worker to help them navigate the transition process.

What are the implications?

Children, regardless of their condition, highlighted the value of features such as parental involvement and seeing the same staff members over time.

It may be that focusing on fewer but more impactful service changes may help focus initial efforts to aid transition to adult services. However, perhaps the most pressing issue recognised by those interviewed is the need for adult services to take greater responsibility by working more closely with children’s services.

Citation and Funding

Colver A, Rapley T, Parr JR et al. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme. Programme Grants for Applied Research. 2019;7(4).

This project was funded by the NIHR Programme Grants for Applied Research Programme (project number RP-PG-0610-10112).

Bibliography

NHS England. Enhancing the quality of life for children with long term conditions. London: NHS England; 2018.

NICE. Transition from children’s to adults’ services for young people using health or social care services NG43. London: National Institute for Health and Care Excellence; 2000.

Why was this study needed?

It is estimated up to 15% of young people aged 11-15 years have long-term conditions that require ongoing specialist care, including diabetes. When these young people turn 16, many will need to transfer from children’s to adults’ services to continue their care. This process, known as transition, can take up to seven years to complete. It is a time of increased vulnerability due to potential loss of care continuity and the challenges of adolescence.

Although principles of good practice have been established, there is still variation in the support available to young people. Poor transitions can have lasting consequences, including failure to engage with adult services which may, in turn, impact upon future employment and education opportunities.

This study explored this problem holistically to gain a fuller understanding of the issues involved to pinpoint the most effective interventions.

What did this study do?

This NIHR study undertook three work packages which included the formation of a young people’s advisory group, a three-year study of 374 young people across 27 NHS Trusts assessing what they saw as beneficial features of transition programmes, and interviews with staff such as commissioners of adult services.

The beneficial features assessed included staff who promoted self-management of health, having a key worker, written transition plans, meeting the adult team before transfer and parental involvement (if wanted by the young person).

All study participants were aged between 14-18 years and had cerebral palsy, autistic spectrum disorder or type 1 diabetes. Young people with learning disabilities were excluded if they could not complete the questionnaire that assessed their views on the topic.

What did it find?

  • Differences in health-related quality of life were assessed using the EuroQol 5-Dimensions (Youth) (EQ-5D-Y) tool. Young people with type 1 diabetes scored considerably better than their peers with a median utility score of 0.94 (0 = worst possible health, 1 = best health) compared with 0.76 for young people with autistic spectrum disorder and 0.70 for those with cerebral palsy.
  • 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.
  • Young people were generally satisfied with services, although parents’ satisfaction was significantly lower. Over the three-year period covered by the longitudinal study, satisfaction with services remained stable for those with type 1 diabetes, but for those with cerebral palsy or autistic spectrum disorder, it progressively worsened.
  • The three main service features found to be associated with better outcomes were ‘appropriate parent involvement’, ‘promotion of health self-efficacy’ and ‘meeting the adult team before transfer’. However, not all children were offered these, and services often overstated their offering.
    For example, for services that said they facilitated appropriate parental involvement, 23% of children did not find this to be the case. Also, there was disparity between the three conditions, while two-thirds of children with diabetes met a member of the adult team before transfer, less than one-quarter of those with either autistic spectrum disorder or cerebral palsy did.
  • Even though transition can last until a young person is in their early twenties, commissioners and providers of adult services felt that it was the responsibility of children’s services.

What does current guidance say on this issue?

NICE guidance from 2016 states that managers in children’s and adults’ services need to work together to enable a smooth transition. Examples of good practice include having a joint mission statement and information sharing protocols.

Transition plans also need to reflect the individual’s capabilities, and preferences and young people should be asked regularly about parental or carer involvement.

Before transfer, they should be able to meet someone from adult services and choose a named worker to help them navigate the transition process.

What are the implications?

Children, regardless of their condition, highlighted the value of features such as parental involvement and seeing the same staff members over time.

It may be that focusing on fewer but more impactful service changes may help focus initial efforts to aid transition to adult services. However, perhaps the most pressing issue recognised by those interviewed is the need for adult services to take greater responsibility by working more closely with children’s services.

Citation and Funding

Colver A, Rapley T, Parr JR et al. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme. Programme Grants for Applied Research. 2019;7(4).

This project was funded by the NIHR Programme Grants for Applied Research Programme (project number RP-PG-0610-10112).

Bibliography

NHS England. Enhancing the quality of life for children with long term conditions. London: NHS England; 2018.

NICE. Transition from children’s to adults’ services for young people using health or social care services NG43. London: National Institute for Health and Care Excellence; 2000.

Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme

Published on 24 May 2019

Colver A, Rapley T, Parr J R, McConachie H, Dovey-Pearce G, Couteur A L, McDonagh J E, Bennett C, Hislop J, Maniatopoulos G, Mann K D, Merrick H, Pearce M S, Reape D & Vale L.

Programme Grants for Applied Research Volume 7 Issue 4 , 2019

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.

Expert commentary

Transition from paediatric to adult care is a critical stage for young people with long-term conditions such as type 1 diabetes. A positive transition experience can lead to better outcomes in the long-term.

This programme is the first to focus on commissioning for transition, and critically places a young person’s advisory group at the heart of the programme. All commissioners should listen to the experiences of young people to enhance their transition services and consider whether there are elements of this programme that they could adopt.

Interesting common themes are captured from young people in relation to current transition practices, but more research is needed to fully understand each condition’s transition needs to optimise transition and offer truly personalised transition care.

Elizabeth Robertson, Director of Research, Diabetes UK

The commentator declares no conflicting interests