This is a plain English summary of an original research article
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.
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).
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.
Produced by the University of Southampton and Bazian on behalf of NIHR through the NIHR Dissemination Centre