Already in 1991 Robert Blum pointed to the diverse set of issues of which the clinicians need to be cognisant to successfully care for youth with chronic illness. Since then, the special health care needs of adolescents and young adults with chronic diseases, including rheumatic diseases, have been on the agenda. Despite efforts to develop holistic services and programmes for youth, there are still inconsistencies in service delivery and practice standards. This revealed a survey among paediatric rheumatologists from 115 centres in 22 European countries in 2016. A minority of European paediatric rheumatology centres have a written transition policy, follow a standardised, structured approach in transitioning patients and measure the success of their interventions with evaluated instruments. To overcome these deficits and existing practice variation, key elements of transitional care, frameworks and pathways to implement and assess transition programmes have been recommended by EULAR and PRES.
However, as long as we don't have robust evidence upon best practice for transition, on the best metrics for measuring “success” and “outcome” of transitional care services and on the impact of interventions on the young people with rheumatic diseases will the service planning and delivery for transition aged youth remain suboptimal and result in adverse long-term outcomes.
The literature about transitional care is exponentially increasing each year and comprises among others assessments of experience of care and clinical outcomes, evaluations of different services and processes of care. What we have learned so far from transition research in the field of rheumatology, which research priorities are currently set on the agenda by health care providers and whether they meet those of young people will be in the focus of this lecture.
Disclosure of Interest None declared