The aim of this project was to understand patient experiences of transitioning from paediatric to adult services, to gather current and previous views on the transition process as well as to capture recommendations on what the service should consider going forward.
The study was open from March until August 2024 to people with an LSD condition aged 16 years and above living in the UK. Of the 42 respondents, aged between 16 and 43 years, 35 had already transitioned and 7 were currently in the process of transitioning.
Many respondents highlighted the need for better preparation, information, and emotional support when transitioning from paediatric to adult care. Survey results also highlighted that those who attended a transition clinic had a more positive transfer, especially when clinics involved individuals from the adult team.
