Aims The research aimed to identify the views and experiences of young adults during the transfer of their clinical care from paediatric to adult services.
Methods Three focus groups were initially conducted to identify what was important to young adults during their transfer from paediatric to adult healthcare services. Participants were young adults who had a long-term health condition and were in the process of transferring, or had recently transferred. Content analysis was used to analyse the focus group qualitative transcripts.
Results The focus group analysis identified the following key themes:
Expectations of ‘transition’- Knowing what transition meant, what it would involve, and what to expect in adult care (e.g. an increased responsibility of self-managing their condition, and changes in parental involvement).
Meeting the new team- It was valuable to visit the new location and meet the new teams that would be providing their care, prior to transferring.
Life decision support- Young people need support in making major life decisions such as workplace options or where to study.
Support from others- Young adults would find it useful to contact others who had recently been through transition, either face to face or via anonymous online forums/support groups.
Timing- None of the young people had a timeline specifying when changes in their care would take place, and felt this would be useful.
Conclusion Paediatric and adult services need to work together to ensure that children and young people have a positive experience of transition. The current research revealed what is important to young adults during this transfer process. Findings are being used to inform the development of a patient reported experience measure (PREM) asking those with a long-term health condition about their recent transfer. A Transition Operational Group convened by NHS England and NHS IQ, who are agreeing a service specification for transition, are also being consulted. The final PREM will be used to measure experiences of transfer, to drive improvement, and to assess the efficacy of planned transition programmes.