Looking through the patient lens – Improving best practice for young people with juvenile idiopathic arthritis transitioning into adult care

We describe a qualitative study to establish the emerging needs of young people with juvenile idiopathic arthritis (JIA) as they go through the transition process, identifying which elements are valued and where support gaps exist. Qualitative interviews with healthcare professionals, young people with JIA and their parents explored the lived experience of transition to care in an adult rheumatology clinic. Perspectives of the experience and reflections of the process of transitioning were captured along with the young people’s views of optimal support. Service provision in the clinical environment varied. Service design for this particular patient group has an impact on how young people optimise management of, and engagement with, their condition during young adulthood. Two specific themes emerged that had the greatest impact on defining a positive user experience of transitioning care: tailored service provision within the clinical environment and support for those living with JIA beyond the clinic doors (we have termed these the lived experience). Factors of importance to young people with JIA were grouped into key domains, namely: day-to-day life with JIA, emotional and developmental factors and a desire for independence. The young people and healthcare professionals interviewed in this small qualitative study highlighted some common themes considered critical in the development and organisation of an excellent care pathway from paediatric to adult healthcare. Aligning the clinical process with young people’s individual needs and lifestyle creates stronger beginnings in adult care.