Papers
Overview Paper PDF 118Kb
This is an overview of our research. It brings together all our findings and their implications.
Detailed results are referenced to our published papers.
Features of transitional healthcare associated with better outcomes PDF 672Kb
Features of transitional healthcare associated with better outcomes for young people with long-term conditions.
These are:
- Appropriate parent involvement
- Promotion of ‘Health self-efficacy’
- Meeting the adult team before transfer
Patient satisfaction, mental well-being & the clinical course-in Type 1 diabetes PDF 112Kb
Relationships of patient satisfaction with services and mental well-being to their clinical course in young people with Type 1 diabetes mellitus during transition.
Scores of mental wellbeing were comparable with those in the general population at baseline and were stable over the study period. Satisfaction with services was also stable.
However, the clinical course varied much. By the last visit, 75% had a sub-optimal clinical course; and this was not related to wellbeing or satisfaction with services.
The health needs of young people with cerebral palsy during transition PDF 170Kb
The health needs of young people with cerebral palsy during transition from child to adult health care.
A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech.
As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care.
Unmet needs in daily living health care were related to severity of motor impairment and to attending non specialist education. Unmet needs tended to increase over time but were not significantly related to whether the young person had transferred from child services.
Transition of young people with autism spectrum disorder PDF 317Kb
For young people with autism, being on medication or having an additional attention deficit disorder predicted transfer to an Adult Mental Health Service. Outcomes for those not transferred were very variable.
How well do services deliver features proposed to improve transition? PDF 744Kb
How well do services for young people with long term conditions deliver features proposed to improve transition?
Many features are delivered infrequently, especially for those with cerebral palsy.
We also found much disagreement between what a service said it provided and what the young person said they experienced. For example agreement about ‘having a written transition plan’ was only 30%; but agreement about ‘promotion of health self-efficacy’ was 77%.
Baseline data from the longitudinal study PDF 599Kb
374 young people joined the study; 118 with Autism Spectrum Disorder, 106 with cerebral palsy, 150 with diabetes. Participants had a significant but not substantial difference in socio-economic status (less deprived) compared to those who declined to take part or did not respond.
Satisfaction with services was good as the ‘gap’ scores (the difference between their ideal and current care) reported by parents and young people were small. Parents’ satisfaction was significantly lower than their children’s. On every domain of the Rotterdam Transition Profile, except for education and employment, significant differences were found between the three groups. A larger proportion of young people with diabetes were in a more independent phase of participation than those with ASD or CP. The wellbeing scores of those with diabetes or cerebral palsy were similar, and significantly higher than for those with autism.
The role of integrated commissioning in improving transition PDF 135Kb
Commissioners perceive there to be a lack of national and local policy to guide integrated commissioning for transitional care. Furthermore, commissioning organizations responsible for transition have different cultures, funding arrangements and related practices which make inter- and intra-agency co-ordination and cross-boundary continuity of care difficult to achieve.
Integrated commissioning may be an effective way to achieve successful transitional care for young people with long-term health conditions.
Interviews about what constitutes successful commissioning for transition PDF 753Kb
Both commissioners and providers thought successful transition is personalised, coordinated and collaborative with a focus on broad life outcomes and actualised through building pathways and universal services. Many challenges were described, including inconsistent national guidance, fragmented resources, lack of clear outcomes and professional roles and relationships.
Commissioners need to require care pathways that enable integrated provision for this population and seek ways to ensure that generalist community providers engage with children with long-term conditions from early on. Future research is needed to identify a core set of specific, meaningful transition outcomes that can be commissioned, measured and monitored.
Q-sort study investigating how young people approach transition PDF 466Kb
We found young people adopted one of four approaches: ‘Laid back’, ‘Anxious’, ‘Autonomous (wanting to be in control)’ and ‘Socially oriented’.
Introducing Developmentally Appropriate healthcare to UK hospital settings PDF 311Kb
This ethnographic study examined the barriers and facilitators to introducing Developmentally Appropriate Healthcare. One cannot rely on informal networks of enthusiasts. Rather, an organisation-wide approach is required across adult and child services; Trusts with a Transition Coordinator were far more effective in introducing Developmentally Appropriate Healthcare.
Health professionals' & managers' definitions of DAH PDF 678Kb
Health professionals' and managers' definitions of ‘Developmentally Appropriate Healthcare’ for young people: conceptual dimensions and embedded controversies
Developmentally Appropriate Healthcare for Young People: Scoping Study PDF 486Kb
The scoping study from the Programme which examines how the concept of ‘Developmentally Appropriate Healthcare’ has been used internationally.
Did previous exposure to research influence recruitment to the Transition study? PDF 316Kb
This paper found that previous invitations to join research projects made it more likely a young person would join the Transition study.
The process of involving young people in our research PDF 401Kb
It is received wisdom that involving the public in research (in this case young people) leads to better research. Studies to show this are difficult to conduct. This paper describes a survey of those involved in the research programme to establish their views on involvement of young people. Conclusions relate both to the importance of involving young people in research and to what involvement in research actually means.
New Understanding of Adolescent Brain Development PDF 360Kb
Understanding adolescent brain development, and its relevance to transitional healthcare for young people with long term conditions.
Protocol for the longitudinal study PDF 161Kb
Protocol paper
Hospital Anxiety and Depression Scale PDF 267Kb
Technical paper which found it was valid to use this scale in those with Autism Spectrum Disorder.
Models of transitional care for Young People: Scoping study PDF 461Kb
We found few papers, and most concerned those with diabetes mellitus. Many of the models had stopped because adequate funding for sustainability had not been built into the original development.
